Sid's multiple myeloma journey

Final Posting

2011-09-29T16:36:00.001+13:00

Sid passed away on the 16th September 2011 from the effects of myeloma. He was proud to carry the burden of it.

Rev-lite trial: end of cycle 5.

2010-09-17T00:18:00.002+12:00

I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That's 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn't stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.

Back in Blogsville and an earthquake.

2010-09-06T19:16:00.002+12:00

Back in Blogsville.
Not many postings from me recently mainly due to the impact of being diagnosed a diabetic. Diabetes has taken the wind out of my sails.
I am comfortable with myeloma, had it for over 9 years, been through several treatment/remission/relapse phases, keep up to date with myeloma news and now it seems Revlimid and dexamethasone have lowered my IgG levels down into the normal range.
Diabetes is an unwelcome invader into my body, just like myeloma was. Eight weeks on I am coping much better, accepted it and moving on to find my new normal.
Let the postings resume.

Earthquake.
Three days ago there was a major earthquake in New Zealand (7.1) causing considerable damage to a major south island city, Christchurch. I live about 1050 km (655 miles) away in the north island. All is well here.
Buildings in NZ these days are built to strict earthquake codes and seem to have survived major damage. Older buildings and homes seem to have suffered considerable damage, many are being demolished.
There was no loss of life mainly due to the quake occurring at 4.30am.

Rev-lite trial: end of cycle 4.

2010-08-18T23:57:00.011+12:00

Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.

Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.

Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8

Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.

Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.

Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.

Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.

General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.

Rev-lite trial: end of cycle 3.

2010-07-30T21:41:00.007+12:00

Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.

Who let the dexo dogs out?

2010-07-22T01:06:00.005+12:00

Who let the dexo dogs out; they mauled me and left me with diabetes.
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.

Links (open in new page):
Oral Candina
Clinical trial

Lytic lesion right femur update 3

2010-07-01T22:54:00.011+12:00

Update right leg:
Update 3 on lytic lesion right femur from myeloma.
This week Tuesday 27th July 2010 I had an appointment with orthopedics to discuss bone progress at the lytic lesion on my right femur and to x-ray the leg
The rod and pins are all stable.
My treatment for myeloma (Rev-lite trial) is at cycle 3, end of week 1. I also have monthly infusion of Aredia.
X-ray showed the myeloma lytic lesion has not increased; it seems to have decreased and there is evidence of bone healing. I did not expect the lesion to reduce the day treatment started, the evidence is it is now working, starting to look like a real bone again. Because of good progress we will not have any radiation at this time. Radiation would have interfered with the trial protocol and the trial may have had to stop.
There is no pain in the right leg, I have more movement and strength is returning.

Left leg:
My left leg has minor myeloma deposits in the femur identified on previous x-ray. We are hoping the Rev-lite trial of Lenalidomide and dexamethasone will treat that.
Last Sunday I started to feel pain in my left femur about an hour after a long walk. This pain was similar to the lesion pain I originally felt in my right femur. Next day I had the right leg x-rayed and compared with the x-ray of 2 months ago. There was no change between x-rays, no fine cracks or fractures visible. It was difficult to determine the cause of pain so decision was to increase pain relief, stay off the leg for 2 to 3 days and monitor. So far the pain is reducing; today the leg is feeling better. The cause may be muscular or nerves.

Links: [Link opens in a new page]
Saturday 3rd April 2010: Lytic lesion right femur
Thursday 8th April 2010: Lytic lesion right femur update
Sunday 22nd May 2010: Lytic lesion right femur update 2
Tuesday 22nd June 2010: Rev-lite trial end of cycle 2

Rev-lite trial: end of cycle 2.

2010-06-22T23:43:00.014+12:00

Tuesday 22nd June 2010 I completed my Rev-lite clinical trial cycle 2 (28 days) for myeloma.
Test results:
The test results available indicate that I am responding well to the new treatment.
Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Side effects:
I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.
Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.
Myeloma:
My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.
Right femur, Lytic lesion and fracture:
The fracture in the lytic lesion of my right femur is healing.
I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.
All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.
Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.
Pain relief:
My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.
Peripheral neuropathy:
I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.
During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.
As a test I missed the drink one evening and yes, the cramp was there the next morning.
I have now added some magnesium vitamins as well.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.
General:
We have moved from the single beds downstairs to the main bedroom upstairs.
I am now driving the car.
Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.
I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.
Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.
The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.
If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite trial: end of cycle 1.
Rev-lite trial: cycle 2, day 18

Rev-lite trial: cycle 2, day 18.

2010-06-12T17:25:00.006+12:00

My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.

The Pine cone man

2010-06-04T20:48:00.003+12:00

During myeloma relapse 1 recovery (2007) from myeloma treatment I had to devise ways to regain my fitness and strength.
About 3 blocks from home is a very large park with walkways, trees and seats. My initial goal was to walk to the park and return.
That was accomplished fairly quickly. Soon I was adding walking in the park extending the walk as fatigue reduced and I became fitter.
In the park are a large number of pine trees which shed pine cones good for home fire burning.
Ah ha I thought, there is another fitness idea.
My left humerus had just been rodded due to a plasmacytoma destroying the bone at mid shaft. The arm and shoulder needed strengthening. On my park walks I would now take an eco bag to fill with pine cones. I used the left arm to carry the bag flexing the arm along with other exercises as I walked along. Over time it all became stronger.
Then Myra dropped a bomb shell. She said, “We use electricity for heating. The pine cones will have to go.” After negotiations with her (I won) it was decided after drying out I would store the pine cones in rubbish sacks and place outside and cover with a rain proof cover ready to give to those who needed them over winter.
A bag full of dry pine cones on a cold, wet winter’s night is a welcome surprise.
I still continue collecting pine cones on my walks and have found some more parks with pine trees that I drive to. My two grandchildren have become expert pine tree finders.
Best time for collecting pine cones is after strong winds or a storm.

It's been two tough months

2010-06-01T16:55:00.008+12:00

April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.

All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.

Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.

Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac

Rev-lite trial: end of cycle 1.

2010-05-27T00:15:00.019+12:00

Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.

Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010

Lytic lesion right femur update 2

2010-05-23T10:05:00.002+12:00

Update 2 on lytic lesion right femur from myeloma.
Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.
The rod and pins are all stable.
The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.
Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.
I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.
Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.
Now I’m getting all excited!

Loss of independence

2010-05-16T13:27:00.005+12:00

When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.

I’m on the Rev-Lite clinical trial

2010-05-10T11:41:00.005+12:00

False starts:
After 2 false starts I am now on the Rev-lite clinical trial for relapsed myeloma.
False start #1 was a lytic lesion suddenly detected in my right femur requiring hospitalisation for intramedullary reconstruction nailing.
False start #2. 14 days after discharge I could not put any weight on my right leg and it was very painful. An x-ray showed there was now a fracture in the lesion, in hospital for 8 more days.

Clinical trial summary:
My Rev-Lite trial commenced on Wednesday 28th April 2010.
Study title: Phase II trial of low dose Lenalidomide and dexamethasone in relapsed or refractory multiple myeloma (Rev-Lite) in patients at high risk for myelosuppression.
The purpose of the study is to see whether a lower dose of Lenalidomide in combination with dexamethasone is effective in treating multiple myeloma which has not responded or relapsed to prior treatment, while producing fewer side effects in comparison to the higher dose used in previous trials.
Brand name = Revlimid. Generic name =Lenalidomide.
Treatment for first 4 cycles of 28 days is:
Lenalidomide 15mg dose on days 1 to 21, then 7 days free.
Dexamethasone 20mg dose on days 1-4, 9-12, 17-20, and then 8 days free.
Aspirin daily.
After 4 cycles the status of my disease will be reassessed. If my disease has shown improvement or remains stable I will continue on the study. If my disease has become worse my participation in the study will stop.
There are the normal warnings of many side effects.

Funding:
In New Zealand we have a public health service. Unfortunately the funding agency Pharmac does not fund Valcade or Revlimid. They are approved for use in NZ and applications for public funding are in the system. We have to compete for the Pharmac dollar along with all the other cancers and illnesses. If we want it we have to fund it ourselves. Currently 6 months of Revlimid costs about NZ$50,000. The Rev-lite trial is at no cost to me.
Private health insurance for cancers is a recent development in NZ that is gaining popularity though the cost is alarming. Previously we had believed that the health service would be the provider. I did not qualify for the Valcade trial but do for the Rev-lite trial.

My myeloma journey continues.

Why did this happen to me?

2010-04-26T20:54:00.001+12:00

I was due to start my rescheduled myeloma Revlite clinical trial on 15th April 2010. Unfortunately the evening before the trial I developed huge pain in my right femur the one that had been rodded and pinned 2 weeks prior. I could not apply any weight to my right leg. Next morning I could not get out of bed so phoned the hospital who cancelled my trial and ordered an ambulance to take me to hospital.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.

Lytic lesion right femur update

2010-04-08T20:17:00.001+12:00

My right femur is making good progress 13 days after full length rod and pins to support a lytic lesion.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.

Lytic lesion right femur

2010-04-03T16:19:00.002+13:00

I have been offline for 12 days, here’s why.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.

Myeloma relapse 1

2010-03-23T15:52:00.003+13:00

My autologous stem cell transplant for myeloma in December 2001 took me into the plateau stage. I was free of bone pain, life had virtually returned to normal,
The plateau “golden years” continued until September 2006 when I suffered a pathological fracture of my left mid shaft humerus. It sneaked up on me, came from nowhere. At that time my test results showed no indication of myeloma, all was normal, I was feeling good.
In January 2007 I commenced maintenance treatment of Thalidomide, 50mg/day.
All remained normal until December 2007 when my IgG and paraprotein started to increase. Until then because of the normal test results I could not accept that myeloma had returned. Perhaps I was in denial. I wanted the plateau dream to continue.
Faced with the facts of these increased results my denial was over. It was time to face the truth; plateau 1 had come to an end, relapse 1 had commenced.
I developed a lytic lesion in the surgical neck of the left humerus. That was treated with radiation.
Peripheral neuropathy from Thalidomide was becoming an increasing problem.
A lytic lesion developed in the mid shaft right humerus and shoulder. That also was treated with radiation.
Bone pain was increasing, IgG and paraprotein was increasing, myeloma had well and truly returned.
It was decision time, 3 options were considered.
1. Increase Thalidomide with a corresponding increase in peripheral neuropathy.
2. Add or change to cyclophosphomide and dexamethasone.
3. A second ASCT using the remaining stem cells collected in 2001.
In New Zealand we have a free public health system. Velcade and Revlimid are not available from Pharmac the treatment managing agency so were not considered.
In August 2008 I was given autologous stem cell transplant 2 which put me into plateau 2.

Plateau stage: A stable stage of my disease following a good response to anti cancer treatment.

I found my ears

2010-03-20T19:25:00.002+13:00

One of the positives from having myeloma is I found my ears!
Before myeloma I was a typical male, didn’t listen, wouldn’t listen, too busy too listen.
As my daughter used to say, “Dad, your ears are painted on”. Though I wouldn’t admit it, she was right.
Being diagnosed with myeloma, learning about myeloma and going through initial treatment I had to gain knowledge by listening to and trusting others. This is when I had to stop, shut up and listen. Good things happened when I learnt to listen.
I realised that the 2 lugs on the side of my head had another purpose other than holding my glasses on, they are a listening device. When I stopped and listened people made sense.
Learning to listen has been one of my survival skills.

Bone marrow biopsy

2010-03-17T21:44:00.002+13:00

This week in preparation for a clinical trial I had a bone marrow biopsy.
I have had 4 previous bone marrow biopsies during my myeloma journey.
Unlike a few unfortunate others I have had no problems except for a little soreness over the following 2 days.
The procedure at my hospital is to have a local anaesthetic and a mild sedative, I agree with that.
The sedative puts me to sleep; I feel nothing and wake up in the recovery room when it is all over.
Myra always comes along to watch and said that when they pull the sample out my toes wriggle!!
Now I wait for the results.

Soft tissue plasmacytoma update 1

2010-03-07T21:09:00.008+13:00

A quick update.
Went to the oncologist last week for a 6 week post radiation follow up. All is well; the two soft tissue plasmacytoma on my skull have reduced as expected. I asked for my hair back and all I got was a smile.
Unfortunately 3 more lumps have appeared and my IgG and paraprotein are rising.
The problem now is not soft tissue plasmacytoma in isolation but my myeloma being systemic (throughout the body). We need to treat the cause, myeloma returning.
I have been in discussion with my haematologist. The last treatment cyclophosphomide and dexamethasone only gave me 3 months remission. Valcade and Lenalidomid are not available by Pharmac for free in NZ, my options are reducing. As a result we are exploring the option of a clinical trial, preferably Lenalidomide and dexamethasone.
Big appointment Wednesday 10th afternoon.
Will tell you more when I know for sure.

Link:
Soft tissue plasmacytoma
Pharmac

Survivorship – 1: Proactive stance

2010-03-03T22:27:00.012+13:00

Survivorship presentation on myeloma survivorship, my first four months.
Part 1 of 6. Proactive stance

1. Survivorship Pro-active stance.
Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.
Ownership: I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”
Denial: When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.
Emotion: Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.
Anger: I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.
No abuse: There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.
Confront death: Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.
Be a pro-active patient: I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.

Links to previous relevant postings:

You have cancer.

Decision made to be a myeloma survivor.

Confronting death from myeloma.

Survivorship – The first 4 months

2010-02-28T15:53:00.002+13:00

Late last year (2009) I gave a presentation to my myeloma group on myeloma survivorship, my first four months.
My presentation commenced with my condition at diagnose and I discussed if I wanted to be a survivor.
Some of my strengths are: Positive attitude, can see the big picture, don’t get bogged down with trivia, good planning and organisational skills, a willingness to learn, a self belief that I can do anything. How I used those strengths as part of my survivorship skills was explained in the six survivorship skills I identified.

Pro-active stance: Take ownership of my illness. Before I could move forward and fight my disease I had to address issues that would hold me back.
Myeloma support group: A support system with other myeloma patients.
Team Sid: A network of practical help and support.
Create a myeloma and medical knowledge base: To take ownership of my illness I had to learn about my illness.
Maintain a positive attitude: Continue what I always do, be positive.
Create positive affirmations: Compliments a positive attitude.

My next six postings will expand upon those six survivorship skills.

Two survivorship definitions:
Stages of survivorship: Debbie Moore LBF NZ.
Acute –Begins with diagnosis and spans the time of further diagnostic and treatment effects.
Livestrong - Lance Armstrong Foundation.
Survivorship begins at diagnosis, the moment your battle with cancer begins, and continues through your treatment and beyond.

Do it sooner rather than later

2010-02-17T21:19:00.002+13:00

Six months after my first stem cell transplant for myeloma (2001) Myra and I discussed my progress and medical future with my haematologist. All was going well, my bloods, IgG etc were normal.
We said we had intended to travel as we got older. He said “do it sooner rather than later.” Rather ominous but that’s myeloma.
He said because of my compromised immune system try to avoid long haul flights and be selective where we travel. Avoid counties with limited hygiene, over crowding and be careful of what I ate.
I was 54, still had to work for an income. Our decision was easy.
We would plan a holiday (vacation) of 2 to 3 weeks once a year. Exploring New Zealand where we live and Australia a three hour flight across the Tasman Sea.
Our themes were keep it simple, let’s have fun, let’s create some memories, lets spend quality time together while I am well.
As we have a son and daughter-in-law in Sydney we factored a few visits there.
Our Australian holidays have been:
Cairns 2003
Sunshine Coast June 2004
Gold Coast 2005
Sydney May 2006
Sydney Christmas 2006
Gold Coast to Sydney Sunshine Coast (2007)
Sydney (NRL grand Final) September 2007
Melbourne May 2009
Sunshine Coast November 2009
Australia has a warmer climate than New Zealand. We travel in May (southern hemisphere autumn/fall) when the day time temperature is about 24C (75F).
Lots of good memories.

Myeloma plateau or remission

2010-02-14T21:29:00.003+13:00

Now that I had reached my first myeloma plateau stage people were asking “what is a plateau stage”?
When I was diagnosed with myeloma in 2001 myeloma was considered a cancer that had no cure. It was explained I would have treatment, recover, then enter a plateau stage. This would be followed by a relapse, more treatment, then another plateau stage. This cycle of treatment/plateau/relapse was to be my future with the plateau stage getting progressively shorter. Treatment was chemotherapy; Thalidomide was on the horizon, that was it.
Plateau was described as a stable stage of my disease following a good response to anti cancer treatment. The word remission was not used.
It is only in recent times that the word remission has been introduced into the myeloma vocabulary. Now it is:
CR = complete remission.
VGPR = very good partial remission.
PR = partial remission.
NR = no remission.
The advent of the new generation treatments Thalidomide, Velcade, Revlimid and their alphabet combinations VTD, RTD, VPM etc, etc have changed outcomes. Improved treatment responses means people are now living longer with myeloma.
With total therapy treatment now available CR is the expected outcome. If I was a participant of total therapy treatment I would be totally focused on CR and would be telling everyone my entire goal is CR. Plateau would not be used.
My reference to plateau stage is now being challenged by myeloma treatment moving forward, it is time for me to reassess.

Interferon maintenance for myeloma

2010-02-08T21:50:00.001+13:00

After achieving the plateau stage following my first autologous stem cell transplant for myeloma in 2001 my haematologist put me on maintenance therapy of interferon alpha.
At that time trial data suggested that interferon maintenance therapy improved remission duration in patients following transplants.
The interferon was self administered, injecting into my thigh or stomach three times a week.
Initially I suffered side effects of flu like symptoms and chills the day after the injections. These progressively reduced and disappeared after four weeks.
Eventually I began to suffer the symptoms of depression. This was attributed to the Interferon therapy. My depression was getting progressively worse so in early 2005 I stopped the Interferon and the depression disappeared.
With the introduction of the newer treatments we now have, Interferon seems to have fallen out of favour.

Myeloma wish list

2010-02-04T21:12:00.003+13:00

I have been thinking. What would be most helpful to make life better for myeloma patients? Here are some of my thoughts.

USB port:
It’s the era of computer development so why weren’t we born with a USB port some where on our body. Plug a lead from the port to the computer and through a computer programme we could diagnose, read all blood results and determine anything else that was wrong. If the programme was smart enough it could even do a bone marrow biopsy.
That would do away with finding veins.

Car park building ticket:
Ever tried to put your arm out the car window to get the ticket from the car park ticket machine while suffering myeloma bone pain? Sometimes I had to ask Myra to get out of the passenger seat and walk around to get the ticket out of the machine for me. I want an arm on that machine that extends into the car so I don’t have to reach out.

Speed humps:
Speed humps should be made from soft foam rubber that would help the bones!!!

Showering:
Showering with myeloma bone pain and restricted movement is difficult. I need a showering machine like a car wash. Turn it on, walk in and let the brushes and rollers do the work.

Plumbing inlet/outlet.
Needles in veins for blood tests and IV lines could be avoided it we were born with permanent inlet outlet taps connected directly to a vein.

Electronic bed:
That’s already available and I have used one, a great help. During my second ASCT I had an arm in a sling and was suffering myeloma back pain. The hospital gave me the electronic bed complete with remote control. Move it up, move it down, raise the head, raise or lower the legs.

Central vein occlusion again

2010-02-01T19:26:00.005+13:00

A month after finishing my final VAD cycle for myeloma and 2 days after my stem cell harvest (2001) I developed blurred vision in my left eye resulting in a mild central vein occlusion. A previous posting of mine covered that.
Link: Left central vein occlusion.

Three and a half years later (April 2005) I developed blurred vision in my right eye.
This occurred during my first plateau stage. Two months earlier I had stopped taking Interferon Alpha-2A maintenance treatment. At the time of the blurred vision I was on no medication, all my test results were normal. An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
The left eye (previous central vein occlusion) showed “no signs of the previous vascular event.”
The right eye presented a “swollen optic nerve with tortuous veins and numerous nerve fibre layer haemorrhages. There was diffuse macular oedema.”In simple terms the right eye showed a mild central vein occlusion.
No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My right eye improved and returned to normal. As a precaution my hematologist prescribed a daily low dose aspirin (Cartia) to help thin the blood which I continue to have.
A follow up 9 months later showed that the right eye had returned to its normal state.
I have had no eye problems since.

The corridor

2010-01-25T20:43:00.003+13:00

To reach my haematology day stay appointment at Auckland hospital I went up a lift, out into a lobby then turned right into a long corridor about 50 meters long (USA 46 yards). When walking that corridor prior to an appointment it was natural to be apprehensive. The corridor was long, giving one time to ponder.
After the second month I was responding well to treatment, test results were changing for the better, my way forward was working. That gave me a positive feeling when leaving the appointment.
After successful results the long walk back down the corridor was used to celebrate success. I would glance at Myra; my face would break into a big smile, with my arms pumping into the air I would say “yes, yes, yes”. A couple of times after my bones had mended I jumped up to click my heals.
After the second month that corridor had more good memories for me than bad.
A couple of years later during my plateau stage the day stay was integrated into a new building, the long corridor was no more.
The corridor remains as one of my early myeloma memories.

Coping with death of a myeloma friend

2010-01-22T20:16:00.005+13:00

Three months after my first stem cell transplant (2001) I experienced the first of my myeloma friends dying, death from myeloma.
Myeloma is a cancer which has no cure. At that time in New Zealand prognosis was 3 years, possibly up to 5 years with an ASCT, standard treatment was chemotherapy, thalidomide had not been approved. Death from myeloma was a reality.
Not long after diagnose I went through the process of confronting death. For me to move forward death could not be avoided; there was to be no denial.
Link: Confronting death from myeloma.
When I heard that “J” had died from the consequences of myeloma I was devastated, very distraught. “J” was a mentor to me, helping me from our first meeting at our myeloma support group with coping skills, myeloma, and transplant advice. In 1995 he had been ASCT patient No 4 in New Zealand, a myeloma and ASCT pioneer.
During the previous 3 months I had been very much focussed on me, my ASCT preparation, transplant and recovery. This left me with little time for anything else; I had forgotten that people die of myeloma.
The death of “J” jolted me back to reality.
Unable to cope adequately I approached the Cancer Society of NZ for counselling, a service I had used before not long after diagnose. My counsellor listened to me explain my problem, we discussed the situation then I was introduced to a range of coping skills. It was up to me to decide what would suit me.
From that counselling I have devised a routine that I use when a myeloma friend dies.
Myeloma can be such a selective and personal disease affecting us all differently.
One of my original sayings is repeated: “My illness, my body, my medication.” My myeloma friend has died, not me. My battle continues.
I sit alone and reminisce about my myeloma friend, their illness, the good times, the bad times, what they meant to me and the times we shared. At the conclusion of that I say the first of my farewells.
Next I ask Myra to sit with me, she usually knows the person. We talk together then say goodbye to our friend ending with a prayer.
The final step is to fill in a bereavement card and include a small note to the family. Only when I feel I have fully dealt with the death do I seal and post the card. That is the final farewell.

My myeloma friends mean a lot to me, they are my lifeline. In a corner of my heart I place a red rose for each one who has passed on. Rest in peace my myeloma friends.

John 5:24 “I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life.”

Soft tissue plasmacytoma

2010-01-19T21:38:00.004+13:00

I was diagnosed with myeloma stage III IgG Kappa in 2001.
Link to Summary June 2001 to January 2009.
Last year May 2009 my IgG levels rose and I developed 2 soft tissue plasmacytoma in the skin on my skull. No pain, tenderness, headaches or discomfort just 2 lumps. A fine needle biopsy confirmed what they were.
Treatment was 4 months of cyclophosphamide and dexamethasone. This reduced the IgG back into the normal range and the two soft tissue plasmacytoma disappeared.
Unfortunately in November 2009 the two soft tissue plasmacytoma reappeared and a decision was made to treat them with radiation. IgG has risen slightly but staying within the normal range.
There will be 5 days of radiation started on Monday, a shallow blast allowing my brain cells to remain undisturbed. I will likely loose my hair permanently where the radiation is applied. Unlike chemotherapy where the hair grows back radiation kills the hair follicles.
Last week I had my two soft tissue plasmacytoma measured to create a template for a lead cover with a hole in it to be placed over my skull during radiation.
One soft tissue plasmacytoma is at the front of my skull, slightly to the left but still within the hairline measuring 5cm (2 inches) diameter by 2cm (3/4 inch) high.
The second is at the rear of my crown on the right hand side measuring 7cm by 5 cm (2-3/4 inches by 2 inches) and 1cm (3/8 inch) high.
There are two worrying aspects of my soft tissue plasmacytoma.
First is cosmetic. I am a 62 year old male with a reasonable crop of hair, receding a little and minor thinning on top. To suddenly have two large bald spots in 2 random places is a blow to my pride. Time for a deep breath, short hair cut, find new headwear other than a cap and move on.
Second is why is this suddenly happening to me and why on my skull? Is this a reaction to the accumulative effect of my treatment over the years? Will there be any more after these have been destroyed? Questions for my haematologist.

It has been difficult to find information on soft tissue plasmacytoma in the skull skin on the internet, the best I have found is here: Link to plasmacytoma overview.
Some notes from that link are:
Solitary plasmactomas can be divided into 2 groups according to location.
Plasmacytoma of the skeletal system (SBP) i.e. in the bones.
Extramedullary plasmacytoma (EMP) i.e. in the tissues outside of the bones.
Although extramedullary plasmacytoma (EMP) can occur in any site, 80-90% of tumours develop in the head and neck area, especially in the aero digestive tract.
Three fourths of extramedullary plasmacytoma (EMP) cases involve males.
Based on the documented radiation sensitivity of plasma cell tumours, the accepted treatment is radiotherapy.

My veins

2010-01-16T22:47:00.003+13:00

A consequence of a blood cancer like myeloma is many blood tests are required.
My veins are not too good, small and hard too find. This creates problems for the vampires, oops nurses, who need to extract my blood.
I go to the local Labtest, previously Med Lab, to extract my blood for tests and have found it helps me to have the same nurse each time as she becomes familiar with my veins and I become confident with her and relaxed.
On appointment day if it’s a cold day I wear gloves to keep my hands warm. Advice from the nurses to help me has included keep the fluids up to avoid dehydration, drink a glass of water on arrival, try a heated wheat bag or hot water bottle on the arms and wear clothes that keep me warm.
To increase the blood flow I keep my veins pumped up by doing hand, finger and arm exercise, mainly flexing. Some people must think I have been let out of the cupboard for the morning as there have been a few strange looks in the waiting room while doing that.
Holding my tongue to the left and closing one eye does not help at all.
When I go to haematology day stay for my monthly Aredia (bisphosphonate) I require an intravenous line in the top of my hand. The visit starts with a drink of water then a soaking of my arms in a large tub of hot water. Again I usually get the same nurse.
Speaking to other patients, apparently bad veins are not uncommon. A young lady in her late teens once told me she some times has to have the blood taken from a vein in her ankle!
I have never had any problems with fear of needles, I have very little fear. It doesn’t matter if I look at the needle going in or look away. I do like to keep my arm or hand relaxed, that does make a difference to me.
Bang, did you here that, some one has fainted reading this. As I wrote “In Helpful hints for myeloma survival” needles come with the myeloma package, overcome the fear.

Chemo brain

2010-01-13T20:00:00.003+13:00

Chemo brain, it's real. In 2001 I had VAD treatment for myeloma followed by an autologous stem cell transplant (ASCT). The treatment and ASCT included chemotherapy drugs Vincristine, Adriamycin, Melphalan and cyclophosphamide. After the ASCT I started noticing memory issues.

There was an intermittent short term memory loss.
At times a short attention span.
I had trouble remembering people’s names.
Difficulty in finishing sentences, some words were not there, or difficulty finding the right word.
Sometimes I could not remember the detail of conversations.
At work technical terms that I used infrequently were hard to recall.
I would plan to do things later or the next day and then forget about it.

I had to resort to writing notes for myself, make lists and have had to get help from whatshername, the lady I am married to. She gives me a word to help finish a sentence, a reminder to use a list or help in recalling a name.
After the first few months of chemo brain whatshername said my selective memory matched my selective hearing!!!
Fortunately it has improved over time though has not gone away completely. Lists and notes are essential.
I have spoken to other chemo patients and many have had a similar experience.
After my second ASCT in 2008 chemo brain returned and remained for 6 months when there began a gradual improvement. Twelve months after ASCT2 I was back to a pre transplant condition, chemo brain still there but more manageable.
The major myeloma and cancer web sites are now acknowledging chemo brain and are a good resource for background information.
During ASCT recovery I went to the local shopping mall by myself, walked around and had some good time out. Got back into the car and found my wife’s Foodtown card in my pocket. Then realised I left the shopping list at home but recalled there were 4 items on the list. So I walked the isles but nothing clicked. Oh dear, back home for the list. Another lesson learnt.

The golden archway

2010-01-10T19:51:00.003+13:00

During my first autologous stem cell transplant I used a visualisation scenario.
Link: Myeloma transplant – visualisation.
The final part of that visualisation scenario was to reach the Golden Archway which represented my post transplant 100 day test results. To pass through the Golden Archway into a future I needed to have successful results.
This I achieved, my IgG was 9.6 g/l (960 mg/dl). At diagnose my IgG was 80g/l (8000 mg/l), pre transplant it was 23.1 g/l (2310 mg/dl). Success, I walked through the Golden Archway.
My future was unknown, how long would I be in the plateau stage, everyone wants to know the answer to that. There is no answer until the plateau stage finishes, then you will know.
My intention was to enjoy every moment, take advantage of my second chance, live for the “now’.
I needed an income so returned to work, initially part time, progressively moving to full time negotiating no more long hours.
Myra and I had had wanted to travel after retirement. After my haematologist said “travel, do it sooner than later” those travel plans were bought forward though somewhat reduced by my health and immune restrictions and income.
Walking through the Golden Archway created a new beginning.

Helpful hints for myeloma survival.

2010-01-07T19:57:00.005+13:00

Here are some helpful hints for myeloma survival that I have learnt or been given by myeloma friends.

Take ownership. It’s your illness no one else’s.

Denial, get over it.

Anger; be angry, deal with it, move on.

Create a knowledge base for myeloma.

Don’t listen to Aunty Mary stories, yours is unique.

If some one cannot say the word cancer out loud they are not on your side, tell them to go away.

Join a myeloma support group for friendship and knowledge.

Help is a phone call away, write down your important contact numbers.

When the day is dark, light a candle.

Some days are surrounded by monsters, there is no way in, there is no way out.

Learn how to say NO!

Learn how to GLARE!

Learn how to say GO AWAY! (Use your own words here)

Learn how to say THANK YOU!

Learn how to SMILE!

Treatment:

Go to appointments prepared.

Be knowledgeable, find out. Leave appointments with results and knowledge.

For pills keep a medication chart or blister pack.

Side effects will happen, be prepared.

Needles come with the myeloma package, overcome the fear.

Day stay / treatment day: You will want to pee. Practice going to the toilet with the IV lines attached before you need to. Practice perfection.

Listen to your body, it’s yours, you know it well. When tired: sleep. When hungry: eat. When thirsty: drink. When you want to go to the toilet: go.

If you want to help me, spend a day in my body, with my pain, with my treatment, with my side effects, with my head space.

Say goodbye to mother ship when the treatment is over, move on.

Positives:

Celebrate success.

Practice positive visualisation.

Create some positive sayings that have meaning to you. Use the words “I” and “will”.

My treatment is working, I am healing, I will get better.

Worrying does not empty tomorrow of its troubles, it empties today of its strengths.

Take time off from being sick, have some fun.

Part 3 Plateau stage commencement

2010-01-04T20:52:00.003+13:00

My retrospective myeloma blog continues.
Part 1 “The beginning” covering initial diagnose and treatment was completed July 2009: Link to summary of part 1 the beginning.
Part 2 ASCT was completed December 2009: Link to summary of part 2 ASCT for myeloma.
I now start Part 3; the first plateau stage.
Results from my 100 day post ASCT were all good, IgG had reduced to 10.3g/l (1030mg/dl) from 80g/L (8000mg/dl) at diagnose and 31g/L 3100mg/dl) prior to ASCT.
My health was good, I had made an excellent recovery, my plateau stage had commenced.
This continued relatively uneventful until September 2006 when over a short period of time a plasmacytoma grew in my left humerus and shattered the bone.
IgG levels were still down and it wasn’t until the end of 2007 that they started to increase. My relapse had begun.
What happened after that will be in Part 4 “the relapse”.
The word remission is now frequently used in relation to successful myeloma treatments. When I was first diagnosed the term remission was not used as it was considered the myeloma will return. More about my views on that in a future posting.

Health update December 2009

2009-12-26T21:31:00.006+13:00

Previous health update link September 2009

My fourth and final cycle of cyclophosphamide and dexamethasone was completed on 21st October.
IgG had reduced to 8.8g/l (880mg/dl) the lowest since diagnose June 2001. At commencement of the first cycle IgG was 22.2g/l (2220mg/l).
My two soft tissue plasmacytoma on my skull had disappeared after the second chemo cycle.
Unfortunately they began to reappear in mid November (IgG has stayed down) and by mid December had grown sufficiently for me to insist on action. I am now awaiting an oncology appointment then radiation. Again there is no pain or discomfort, just two lumps growing larger in size.
December 21st I started to get minor symptoms of shingles, tingling down the right side and back. No rash or blistering. My doctor said he could neither confirm nor deny it was shingles as there was no visible evidence. He gave me a prescription for Aciclovir and a soothing lotion just in case.
All else is normal.

Seasons greetings

2009-12-21T20:25:00.002+13:00

I give a very merry Christmas and a healthy 2010 to all my myeloma friends, caregivers and supporters.
Residing in New Zealand in the southern hemisphere means we do not experience a cold or snow bound Christmas day. It’s summer, long range forecast for Christmas day in my home town is 22C (72F ) with clear blue skies.
My New Year wish is for a cure for myeloma.

Autologous stem cell transplant for myeloma

2009-12-18T20:25:00.008+13:00

This concludes Sid’s multiple myeloma journey Part 2 “ASCT 1”, the second part of my multiple myeloma journey.
It covers my myeloma journey from the end of initial VAD treatment, transplant planning, stem cell harvesting and the autologous stem cell transplant (ASCT) for myeloma and the recovery into my first plateau stage.
There have been 22 transplant postings.
A link to a summary of the part 1 postings (the beginning) can be found here.
Click on the red title links to go to the posting highlighted.
All links come up in a new page.
If you would like to contact me via email my email address is in with my profile.
Feel free to add a comment to any posting.

Myeloma transplant – Preparation
Decision reasons to proceed with an ASCT.

Myeloma transplant – Pre transplant planning
Once the ASCT decision was made my planning began.

Myeloma transplant – Stem cell collection
My stem cell collection, the process, my reaction including severe pain and blurred vision resulting in a central vein occlusion.

Central vein occlusion
Tests for and results of my central vein occlusion.

Myeloma transplant – Planning
My planning of how to live in the BMTU, it was to be my home for 3 weeks. Delegation, support and help.

Myeloma transplant – Caregiver
Myra my wife and caregiver. Could not do without her. What she did.

Myeloma transplant – Visualisation
My visualisation scenario used as a survival tool during ASCT.

Myeloma transplant – Stem cell infusion
The day of my stem cell infusion, an important day but an anti-climax.

Myeloma transplant – Diarrhoea
Transplant diarrhoea is a bit like sex, you have to experience it to believe it.
Hints and help to get through it.

Myeloma transplant – Dry skin
Dry skin and lips from air conditioning and chemotherapy, what I did to overcome it.

Myeloma transplant – Emotions
My emotions caught me by surprise. Up and down, tears and anxiety. A truthful account of my experience.

Myeloma transplant – Hair loss
Hair loss did not worry me, the heat loss from my bald head did.

Myeloma transplant – Nausea
Nausea was a problem for me starting 6 hours after high dose melphalan and continuing for 6 weeks.

Myeloma transplant – Food
During ASCT eating is a challenge, I found hospital food unpalatable. Myra prepared most of mine. I lost 7.2 kg (15 lb)

Myeloma transplant – Mucositis
Paying attention to a mouth wash routine helped me, but mucositis was still there.

Myeloma transplant – Exercise
I had good intentions, kept exercise up but when fever and fatigue came I backed off.

Myeloma transplant – Mind games
Keeping on top of mind games was a challenge.

Myeloma transplant – Days -02 to 05
A summary of days -02 to 05 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 06 to 11
A summary of days 06 to 11 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 12 to 15
A summary of days 12 to 15 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Days 16 to 22
A summary of days 16 to 22 from my diary including my feelings, daily treatment/medication, bloods and weight.

Myeloma transplant – Recovery
How I coped during the recovery period.

Myeloma transplant - Mind games

2009-12-15T21:43:00.001+13:00

During the time of my illness and especially during my autologous stem cell transplant for myeloma I was intrigued by how much mind games came into play.
It was a battle at times to stay focussed on where I was, what was happening and not to let the mind wander into negativity when the setbacks came.
Being an optimist, preparing positive thoughts and sayings I thought my headspace would not be a problem.
The battle was in the evenings or when alone. Concentration was down so the mind wandered. What is that pain, am I progressing, what if this does not work, shouldn’t my white counts be rising now?
Big deal then, trivial now.

Myeloma transplant - Recovery

2009-12-12T20:40:00.004+13:00

Leaving the BMTU after my autologous stem cell transplant for myeloma was a test; the hospital was a secure base. There I had been dependent on others, now I was returning to independence. It was like cutting the umbilical chord from Mother ship.
My plan on leaving the BMTU was to split my time through to 100 day post transplant into 3x3 week groups. This gave me a 3 week at a time focus not looking too far ahead and reassessing at the end of each. For the first 3 weeks I took life one day at a time, only looking back at the end of each week to assess progress.
Myra was at home to help my transition which made it less stressful for me.
Travel to outpatient appointments had to be arranged until I could drive again. Driving recommenced after 10 days at home giving me more freedom.
Nausea was present and treated with Cyclizine for four weeks after coming home from transplant. I began to regain my appetite after two weeks, gaining weight and starting to feel better.
Hair re-growth was noticed four weeks after coming home.
Exercise was slow and steady, limited at first by fatigue. Initially walking was to the third power pole from home and return, increasing one pole at a time. My goal was to walk every day with an increase in distance every second day. Three weeks after coming home I was walking 30 minutes non-stop daily.
We live in a two story house so I used the stairs for additional exercise. Initially one step at a time, then two steps and a rest, then advancing to resting only at the landing. We celebrated when I was able to walk the stairs non-stop.
Fatigue was present for the first two weeks then slowly decreased.
After coming home I noticed I was suffering minor memory loss during conversation, mainly recalling some names and words. This was considered a classic case of “chemo brain” taking about 12 months to revert back.
I was still suffering from back pain especially my compressed vertebrae T8. A 15 to 30 minute rest on the bed usually eased the discomfort. This got progressively better over six months.
During recovery we made Friday our fun day, a day to have some fun, go out for a coffee, a drive or visit someone.
At the post transplant 100 day consultation it was considered I had made a good recovery and was in the plateau stage. Mission accomplished, time to have fun, time to let loose: and so we did.

Links:
Myeloma Transplant Days -02 to 05
Myeloma Transplant Days 06 to 11
Myeloma Transplant Days 12 to 15
Myeloma Transplant Days 16 to 22

Glossary:
BMTU: Bone marrow transplant unit.

Sid's story in LBF magazine

2009-12-09T18:37:00.004+13:00

About this time last year I was interviewed by a journalist doing research for an article to be placed in the Leukaemia and Blood Foundation of New Zealand (LBF) magazine winter edition. LBF wanted a multiple myeloma patient who had myeloma long term and was willing to tell their story.
Encouraging others during their myeloma journey and sharing my experience has always been one of my aspirations. That was the motivation for me to agree to the interview.
I found it a step back 8 years into my myeloma past reviving many memories of my myeloma journey. Myra was present during the interview prompting me when my memory failed and sharing in the story.
Going through that whole process was another reason that motivated me to commence my blog.

A link to the magazine article (edited and 1.3mb) is here. LBF magazine.

A link to the full version (recommended) is here. Sid's story.

Myeloma transplant - Days 16 to 22

2009-12-06T21:25:00.006+13:00

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
My ASCT daily diary is over 4 postings, this is posting 4 of 4; days 16 to 22.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Link to posting 3; Days 12 to 15

Day 16: Fireworks, what fireworks?
Woken by orthopaedics at 3.0am for spinal chord compression investigation. After a series of tests they said all seemed OK. No weakness, numbness or pins and needles. There was still incontinence today.
Rash stable, nausea reduced by Maxalon, no appetite, cold chills and rigors again in afternoon.
Fatigue started in mid afternoon, lifeless, no energy. I have a fever.
When I got the chills or rigors I asked for extra blankets to keep warm.
In spite of the fever I did 4 minutes on the Exercycle and small stretches in the morning.
That evening adjacent to the hospital was Christmas in the park, an annual Christmas concert finishing with a huge fireworks display. The nurses told me that I would be able to hear the fireworks and see some through my window. Now I am a big fireworks fan, love the noise, couldn’t wait. Unfortunately I was so fatigued I could not raise myself up in bed. Can remember some sounds, that was all.
Treatment/medication: Panadol x4, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.40; white bloods 1.36; platelets 93; weight 66.0kg (145.5 lbs)
Temp 0100---38.8C---101.8F
Temp 0500---37.8C---100.0F (reduced by panadol)
Temp 0900---39.2C---102.6F
Temp 1300---37.2C---99.0F (reduced by panadol)
Temp 1700---38.4C---101.1F
Temp 2100---38.4C---101.1F

Day 17:
High temperature, rigors over night, still fatigue, lifeless, no energy. Rash reducing, thought to be caused by reaction to antibiotic. Had a chest x-ray, all OK. Less fatigue in evening.
Still suffering diarrhoea, nausea and incontinence.
Treatment/medication: Panadol x2, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen].
Weight 66.25kg (146.16 lbs)
Temp 0100---38.5C---101.3C
Temp 0500---39.4C---102.9C
Temp 0900---39.4C---102.9C
Temp 1300---39.2C---102.6C
Temp 1700---37.8C---100.0C (reduced by panadol)
Temp 2100---39.6C---103.3C
Link: Myeloma Transplant Diarrhoea
Link: Myeloma Transplant Nausea

Day 18: Fever reduces.
Ate a little at breakfast and lunch. Still on IV fluids. Bowels not so rumbling with more time between motions. Motions are still loose. Central line redressed.
Feeling better after mid day and as day wore on. Appetite returning in afternoon.
Treatment/medication: Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x4], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.43; white bloods 1.06; platelets 121; weight 65.15kg (143.6 lbs)
Temp 0100---38.7C---101.7C
Temp 0500---38.2C---100.8C
Temp 0900---37.3C---99.1C
Temp 1300---36.3C---97.3C
Temp 1700---37.7C---99.9C
Temp 2100---37.7C---99.9C

Day 19: Off the IV fluids at last.
Temazepan gave me 4 hours sleep then broken sleep. Headache at 5.0pm treated with Panadol. Temperature back to normal.
Rash is reducing. No more incontinence problem.
Mouth has improved, not painful any more.
Off the drip this morning, “free at last” though back on again this evening.
Weight still dropping. Only feel like eating occasionally and can’t eat a full meal.
Out of the unit with Myra for 70 minutes. Across the road then to Starship and back. Felt weak, sore back, had French fries at the Starship McDonalds. A special fresh supply for the immune compromised. Recovered well.
Appetite getting better as day wore on, overall a big step forward.
Treatment/medication: Panadol x1, Clexane, Temazepan, [Anti-nausea: Maxalon x2], [Antibiotics: Acyclovir x2, Meropenen x2].
Weight 64.7kg (142.6 lbs)

Day 20: Disaster.
Couldn’t sleep again so took Temazepan then OK. Worrying about the central line removal. Felt OK this morning, in good spirits and looking forward to going home.
Registrar said no more drip or anti-biotic required. I’m free, the IV line and frame is so restrictive. Drank 1.7L fluid today.
Central line out today or tomorrow then home the next day.
Walked to Starship then biscuit for morning tea.
Hair loss has almost stopped, head bald, beard thinned out and very patchy, body hair there in places but gone where skin rubs.
Less motions, they are becoming firmer.
A Nurse tried to remove the central line, unsuccessful. Another nurse tried also unsuccessfully.
Registrar tried to remove the central line twice, unsuccessful, had to call up a surgeon. Major drama, local anaesthetic, incisions, burst blood vessel squirting blood everywhere; they had to apply pressure to the wound for 30 minutes, finally stitched up. After all that I had to have 3 lots of plasma.
What happened was adhesion between my central line and skin, they were stuck together and the line eventually fractured. Normally it is a simple task by a nurse to pull the central line out.
Treatment/medication: Clexane, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.32; white bloods 2.61; platelets 138; weight 64.7kg (142.6 lbs)
Link: Myeloma Transplant hair loss

Day 21:
Intermittent sleep, not going home today because of yesterday’s drama.
The wound had a new dressing today and feels sore.
My red blood count is down, anaemic, had plasma transfusion.
Rest day.
Treatment/medication: Panadol x3, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.04; white bloods 3.93; platelets 166; weight 63.70kg (140.4 lbs)

Day 22: I’m going home.
Panadol at 9.0pm then good sleep. Woke with wound pain at 3.0am, more panadol put me back to sleep.
The wound was not so sore at day break, woke feeling OK.
Discharge today at 11.00am.
I am out of the valley at the top of the climb and can see the golden arches in the distance, my visualisation.
The end of my stem cell transplant hospitalisation, I’m going home.
Only 4 days to Christmas day, going home to be with my wife and family is my Christmas present.
Treatment/medication: Panadol, [Anti-nausea: Maxalon], [Antibiotics: Acyclovir].
Weight 63.25kg (139.4 lbs) a total weight loss of 7.2kg (15.9 lbs).

Myeloma transplant - Days 12 to 15

2009-12-03T20:22:00.006+13:00

Myeloma transplant - Days -06 to 11

2009-11-29T20:51:00.009+13:00

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
My ASCT daily diary is over 4 postings, this is posting 2 of 4; days 06 to 11.
Link to posting 1; Days -02 to 05

Day 06:
Good sleep.
Nausea still present, worse from mid-day to 3pm, this left me down a lot and weepy.
Taking in small amounts of food and fluids. Central line redressed.
IV fluids continuing. Temperature spiked at 38C this evening.
Concentration reduced, stopped playing Sudoku and reading is difficult except in small bursts. Myra’s visits and help very much appreciated.
Bowels in full use. A bad day.
Treatment/medication: Panadol, Clexane, Temazepan, Ativan, Allopurinol, Vitamin C, Gentamian, [Anti-nausea: Maxalon x4, Zofran x2, Cyclizure],
[Antibiotics: Acyclovir x2, Cefpirone].
Weight 67.15kg (148 lbs)

Day 07: White bloods hit zero.
Average sleep. Feeling not too well this morning, more nausea.
Temperature dropping, blood pressure stable.
Had more anti-nausea medication then taken for a chest x-ray, all OK.
Got up after x-ray, felt well when up.
No control over motions, a cough or sneeze would cause a motion, diarrhoea has arrived. Slightly better later in the day. Took codeine for bowels.
Change for the worse in the mouth and throat, mouth care continues.
White bloods <0.1 at the bottom. My visualisation scenario puts me in the swamp at the bottom of the valley. IV fluids continuing. Treatment/medication: Panadol x2, Clexane, Temazepan, Ativan, Vitamin C, Gentamian, Codeine x2 [Anti-nausea: Maxalon x3, Zofran, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone]. Red bloods 3.59; white bloods <0.1; platelets 77; weight 66.30kg (146.2 lbs)
Link: Myeloma Transplant - Diarrhoea.
Link: Myeloma Transplant - Visualisation

Day 08: Mucositis increases.
Good sleep, Maxalon infusion at 4am, feeling not too good.
Mouth and throat mucositis kicking in. Keeping up the teeth cleaning and mouth wash routine. IV fluids continuing.
Poohed pants 3 times, taking pills to stop.
Dry skin is evident so Myra put moisteriser on me all over. Previously I was applying it on face and hands and using lip balm regularly.
I am concerned about steroid welts/rash.
Managing to eat yoghurt and resource drink supplied by the hospital.
Good sleep/rest in afternoon left me feeling better.
Dull headache at late evening.
Treatment/medication: Clexane, Temazepan, Gentamian, Codeine x3
[Anti-nausea: Maxalon x2, Zofran, Haloperidol x2].
[Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 67.2kg (148.2 lbs)
Link: Myeloma Transplant - Mucositis.
Link: Myeloma Transplant - Dry skin

Day 09:
Average sleep and a strange dream overnight.
Temperature up, first day of significant weakness/tiredness = fatigue, times are getting tough.
Still on the drip. Appetite has gone, sipping lemonade ice blocks that are rather tasteless.
Rash (folliculitis) is wide spread, not itchy or hot. It may be a reaction to antibiotics.
Vicky and Myra stayed to encourage me with food and drink. Frequent sips and small amounts of food often, forget breakfast/lunch/dinner.
Perked up in late afternoon and evening. Temperature had lowered.
Headache at bedtime, took liquid Panadol and tempazem, better after.
Treatment/medication: Panadol x2, Clexane, Temazepan, Vitamin C, Gentamian, Codeine x2, [Anti-nausea: Maxalon x3, Haloperidol x2].
[Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 2.97; white bloods <0.1; platelets 19; weight 68.0kg (150 lbs)

Day 10: Hair loss noticeable.
Woke OK, temperature still up. Nausea again so took Maxalon.
Felt uneasy from throat down to gut, a bit like indigestion.
Haemoglobin low so had to have a blood transfusion, first one ever. Went OK, temperature went up and down over the 5 hours of transfusion. Felt good at end.
Bad diarrhoea in the afternoon.
Felt more like eating dinner, first for a long time, only ate a little.
Throat/nausea seems better, mouth still a bit rough with mucositis.
Hair loss becoming noticeable. Wearing a beanie or cap to limit heat loss.
Temperature up in the evening.
Treatment/medication: Panadol x2, Clexane, Temazepan, Gentamian, Codeine x2 [Anti-nausea: Maxalon x3, Haloperidol].
[Antibiotics: Acyclovir x2, Cefpirone x2]
Red bloods 2.84; white bloods <0.1; platelets 22; weight 67.85kg (149.6 lbs)
Link: Myeloma Transplant – Hair loss

Day 11:
Average sleep, no pills or sedatives which were my choice.
Temperature was down this morning.
Mouth and throat feel a bit worse. First time I have felt the throat entry.
Nausea today is minor, only using Maxalon to control it.
Rash still present but not itchy.
Tired in afternoon, slept one and half hours while Myra was here.
Temperature was up at 5pm, Nurse took a culture then more sleep.
Treatment/medication: Panadol, Clexane, Temazepan, Gentamian,
[Anti-nausea: Maxalon x3]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 3.77; white bloods <0.1; platelets 28; weight 66.90kg (147.5 lbs)

Myeloma transplant - Days -02 to 05

2009-11-26T20:40:00.007+13:00

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
The transplant was at the bone marrow transplant unit (BMTU), Auckland Hospital, New Zealand, December 2001.
As I had transport difficulties it was decided I would stay in the BMTU for the duration of the transplant. Due to a 4 day fever and complications removing my central line this turned out to be 25 days.
I must stress that this is my experience of my ASCT. Others will differ in protocol, hospital procedures and what their health was at that time. After speaking to others about their ASCT there is a variation in how one coped, we are all different.
My ASCT daily diary is over 4 postings, this is posting 1 of 4; days -02 to 05.
A complete list of links to my previous ASCT postings are at the end of the 4th ASCT posting.

Treatment/medication.
Acyclovir --antiviral (herpes, chicken pox etc.)
Allopurinol: -------decreases uric acid concentrations
Ativan --------------decreases anxiety
Cefpirone ----------antibiotic
Clexane ------------low molecular weight heparin to reduce blood clotting activity.
Codeine ------------to control diarrhoea
Cyclizure-----------anti- nausea
Dexamethasone--------- synthetic corticosteroid (steroid)
Gentamian----------bacterial antibiotic
Haloperidol --------anti-nausea
Maxalon ------------anti nausea
Melphalan high dose melphalan --(chemotherapy)
Meropenen ---------antibiotic
Methylprednisolone -----anti-inflammatory steroid
Panadol ---------------paracetamol based pain relief
Vitamin C
Temazepan ----------sedative
Zofran ----------------anti-nausea

Day -02: First day.
Good sleep at home; woke early.
It is a significant day, the beginning of my ASCT hospitalisation.
Admission to hospital, check in and administration tasks chest x-ray.
Headache in evening given panadol, vomit at 10pm, probably stress and dehydration.
Treatment/medication: Panadol, Clexane, Temazepan, Maxalon.
Red bloods 4.21; white bloods 9.04; platelets 300; weight 70.45kg (155 lbs)

Day -01: Chemotherapy infusion.
Broken sleep overnight, minor headache when getting up.
Felt down this morning, new environment, perked up when Myra arrived, my wife and caregiver.
Chemo in at mid-day, high dose melphalan and dexamethasone.
Saline continual through to mid-day tomorrow. Pass urine into containers for measuring total volume.
Visit by physio, spent time on Exercycle plus talk on what exercises to do. We agreed on Exercycle, stretching, exercises, walk outside, walk in corridors, walk in BMTU. All may be limited by white counts or fatigue.
Nausea started after dinner.
Treatment/medication: Panadol, Clexane, Allopurinol, Zofran, Dexamethasone, High dose Melphalan, Frusemide?.
Link: Myeloma Transplant - Caregiver
Link: <>Myeloma Transplant - Exercise

Day 0: Peripheral blood stem cell infusion.
Last night long time to get to sleep (steroids?).
On saline overnight, nausea pills toned down nausea, don’t feel like eating.
After breakfast 10 minutes Exercycle, walked 30 minutes, stretching.
Stem cell infusion at mid-day, all went well.
Minor light headed for a short while. Myra could smell the preservative, like strong corn.
Having Myra present perks me up.
Stayed up until 11pm watching TV.
Treatment/medication: Clexane, Allopurinol, Dexamethasone, Methylprednisolone, Peripheral blood stem cells, [Anti-nausea: Maxalon, Zofran x2].
Weight 71.05kg (157 lbs)
Link: <>Myeloma Transplant - Stem cell infusion.

Day 01:
Slept reasonable, dozed through to 7.30am.
Started dull headache and sore jaw joint, took panadol but no effect.
Remaining active.
Felt good for 3 hours then down after lunch, felt weepy and emotional.
Nausea, tired, eating little except for soft foods.
Treatment/medication: Clexane, Temazepan, Dexamethasone, Allopurinol, Acyclovir, Dexamethasone, Methylprednisolone, [Anti-nausea: Maxalon Zofran x2].
Red bloods 3.67; white bloods 10.80; platelets 229; weight 69.65kg (153.5 lbs)

Day 02: Food tasting bland.
Bad night, had sleeping pill with little effect, not much sleep at all. First 3 hours no sleep then broken sleep. Became apprehensive again.
Feeling better during day, went for a walk with Myra.
Food tasting bland, smell of some food is offensive.
Steroids keep me awake, last dose tomorrow.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone, [Anti-nausea: Zofran].
Weight 69.60kg (153.4 lbs)
Link: <>Myeloma Transplant - Food

Day 03:
Good solid sleep 10pm to 7.30am assisted by sleeping pills and sedative.
Felt better all day though susceptible to the occasional drop.
Walked through the corridors to the children’s Starship hospital with Myra to maintain exercise.
Mouth and tongue starting to go off, strange taste.
Still feel weepy at times. A few burps and hiccups today.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Methylprednisolone.
Red bloods 3.46; white bloods 7.76; platelets 187; weight 70.40kg (155 lbs)

Day 04: Diarrhoea underway.
Good sleep with pills again. Woke at 4am with mouth/throat/gut problems. Nausea, dry reaching, mucus, salvia, burping. Had Maxalon then tablets.
Breakfast took a while. Food and drink difficult today. Struggled to eat dinner, took over an hour. Nausea after dinner again so took Zofran.
Diarrhoea underway, rumble, rumble. Gargle tonight included a small throw up.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, Dexamethasone, [Anti-nausea: Maxalon, Zofran].
Weight 68.70kg (151.5 lbs)
Link: <>Myeloma transplant - Nausea.
Link: <>Myeloma Transplant - Diarrhoea

Day 05: IV fluids commence.
Good sleep with pills again, woke with nausea.
Today a bad day, too much nausea, was off food. The pills reduced the nausea but it never went away, advised to take anti-nausea medication regularly, I agreed with this.
IV fluids commenced. Still doing exercises.
White counts now dropping, starting to go down into the valley.
Developing a rash, a rash sample was taken.
Felt fatigued.
Treatment/medication: Clexane, Temazepan, Ativan, Allopurinol, Acyclovir x2, Vitamin C, [Anti-nausea: Maxalon x3, Zofran x2].
Red bloods 3.80; white bloods 2.09; platelets 140; weight 67.15kg (148 lbs)

Peripheral neuropathy reduction

2009-11-17T21:24:00.003+13:00

I have been suffering from peripheral neuropathy caused by thalidomide maintenance for multiple myeloma. After stopping thalidomide the peripheral neuropathy reduced but was still present. The soles of my feet were numb (about 6/10), my feet were often cold and when cold painful, I wore my socks 24/7, I could not walk in bare feet.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.

Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.

Sunshine Coast

2009-11-15T20:14:00.005+13:00

We have returned back to New Zealand from our two weeks at Caloundra on the Sunshine Coast Australia, a three hour flight across The Tasman.
Nice weather 28C, 84F, blue skies. Flying in from 16C, 61F, that was a blessing.
Only health problem was a cough which I believe was bought on by the rental car air conditioning.
A highlight was a visit to Australia Zoo the home of the crocodile man Steve Irwin. Very professional, very clean, well sign posted, lots of shade including shade cloth over rest areas. A shuttle service was available for those who struggle with walking or the tired people. The Crocoseum was awesome, crocodiles, elephants, snakes and birds.
Having ornithology as a hobby I spent a lot of time in the rain forest aviary, a walk through enclosure. Wow, to get so close up to all those Australian birds was a memorable experience.
If you are in Australia we recommend the Sunshine Coast and Australia Zoo.
Now back in New Zealand, back to work, back to blogging and only six weeks to Christmas!!
On Tuesday I visit the hospital for a consultation, more on that next week.

Some good news

2009-10-20T20:23:00.003+13:00

Some good news today and a disappointment.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.

Been too busy!

2009-10-11T20:30:00.005+13:00

My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.

You searched for that!

2009-09-19T06:06:00.003+12:00

On my blog there is a site meter that shows the number of visits I receive. I can access my site meter and read where any referrals come from. Referrals from Google or other search engines make interesting reading.
Here is a short list of recent search results that were directed to my blog “Sid’s multiple myeloma journey”. (My reference posting is in brackets)

Diagnose
Multiple myeloma stage 0
How do you diagnose myeloma? (Pre diagnose)
Myeloma and hypercoagulable state.
Vision and myeloma. (Central vein occlusion)
Myeloma plasmacytoma. (History)

Pain
Bone pain myeloma; (Myeloma bone pain)
Myeloma pain relief; (Myeloma bone pain)
Could pelvis pain be multiple myeloma? (Myeloma bone pain)
Bone pain in humerus. (Myeloma bone pain)
How intense is myeloma bone pain. (Myeloma bone pain)

Treatment
Multiple myeloma VAD treatment. (My VAD treatment for myeloma)
Myeloma stage 3 treatment plan.
Tempazepan medication. (VAD treatment for myeloma)
Myeloma stage I, survivor’s natural treatment;
Sore bum while on chemotherapy. (Transplant dry skin)
Cold sores and myeloma. (Transplant dry skin)

Transplant
Stem cell transplant multiple myeloma. (Transplant stem cell collection)
Harvest stem cells in myeloma. (Transplant stem cell collection)
Myeloma stem cell mobilisation. (Transplant stem cell collection)
Baldness after myeloma transplant; (Transplant hair loss)
Relapsed multiple myeloma transplant will it help and work
Autologous stem cell transplant diarrhoea. (Transplant diarrhoea)
Multiple myeloma dry skin on legs; (Transplant dry skin)

Final stage
Final stage of myeloma. (Confronting death)
End stage multiple myeloma. (Confronting death)
Death from myeloma. (Confronting death)

General
Myeloma aggression or swearing or moods. (Dexamethasone)
Myeloma blog; (Sid’s multiple myeloma journey)
Positive affirmation forums: (Myeloma bone pain)
Affirmation survivor. (Myeloma bone pain)
Eating with myeloma. (Transplant food)
Foods for myeloma. (Transplant food)
Lemon juice for myeloma. (Transplant food)

Health update September 2009

2009-09-10T21:51:00.005+12:00

Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.

This update September 10 2009.

IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.

Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Exercise

2009-09-07T20:32:00.004+12:00

How to approach exercise during my stem cell transplant for myeloma had me baffled. What exercises to do, when, how long, why, could I do it, will it have any good or bad effects.
My medical advisers said that being isolated and immobile during transplant would cause muscle wasting and may cause decreased circulation, DVT, pneumonia or respiratory complications.
My attitude was if I was to achieve a successful outcome I want to stack all the odds in my favour so if maintaining exercise during transplant was going to help my success then I would do it.

Pre transplant I had recovered from initial treatment, gaining strength and walking an hour a day.
Until my white counts dropped too low I continued walking at the hospital for 30 minutes at a time when I could, initially outside then the hospital corridors. My pace slowly reduced as my white counts lowered and fatigue started.
When my neutrophils were low and I was unable to go outside the ward I used an Exercycle in the ward and walked around the room.
The hospital physiotherapist gave me a range of exercises to do during transplant. Stretching, chest expansion, deep breathing, ankle strengthening, arm lifting and rotation, leg lifting all on the bed or standing up and generally tried to keep moving to maintain circulation and limit muscle wasting.
There were times when I could not exercise due to fatigue or tiredness.
Did it help? A little, if I did nothing my condition would have deteriorated. When leaving the BMTU I was fatigued, could walk slowly non stop for 15 minutes and had to rest.
I believe exercise kept me healthier during transplant and helped me recover more quickly.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Mucositis

2009-09-03T20:23:00.005+12:00

From other myeloma transplant patients who had a myeloma stem cell transplant a common comment was about mucositis, mouth and throat issues.
From transplant day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I didn’t feel like it. My attitude was not negotiable; it was in my interest to maintain a healthy mouth during transplant. The mouth wash was supplied by the hospital.
During the first transplant I had no mouth or throat issues. Unfortunately during the second transplant for two days I had difficulty with mucositis, saliva became thicker and being unable to swallow. To overcome this, my medication was given intravenously and pain relief increased. Once my white counts started to rise the mucositis disappeared.
Day 3 was when I first started to feel a change in my mouth. When my white counts started to rise as my stem cells engrafted it was on day 13 that my mouth began to return to normal.
Food and fluid intake became a hassle while mucositis was present.
[Food link] and [Nausea]
Preparation before transplant is important. My dentist was briefed about my transplant, a dental check was completed with no action required. Healthy gums and teeth help in the prevention of any mouth hygiene issues during transplant. My dentist gave good advice on hygiene, teeth and gum cleaning which was similar to the transplant team advice.
Mucositis and painful mouth and throat issues can be controlled by pain relief administered by the transplant team. It is short term, once the white cells start increasing the problem subsides.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
Mucositis: Inflammation of the mouth and throat lining which often occurs after high dose chemotherapy.

Myeloma transplant - Food

2009-08-31T20:08:00.003+12:00

Food and fluids were a major issue for me during both myeloma stem cell transplants leaving me with weight losses of 8kg and 4 kg respectively.
After about 6 days my white counts were coming down, my appetite decreased, nausea increased, mouth and throat became sore and tender, taste buds changed and it became difficult to swallow. [Nausea link] Eating food and drinking became a hassle.
Myra prepared some food recommended by the hospital dietician, food which was easier to eat compared to the hospital food. All my food was approved by the medical team and dietician.
What I could tolerate was moist soft food in small portions, spaghetti, creamed rice, pasta, macaroni, soup, tinned baby food, mashed veggies, mashed potato, the hospital ice cream and yoghurt, jelly and mixed fruit. Breakfast was rice bubbles or wheetbix with ample milk. When the going got tough there were several days when I ate my rice bubbles two at a time. I was advised to add a little more sugar to sweet foods and salt to savoury foods. This had little effect on my taste buds though others have said it made a difference to theirs.
Water became tasteless so I added lemon juice or mixed it with fruit juice. Fruit juice by itself, ginger ale, ginger beer and ginger tea was a good option and I enjoyed a cup of normal tea or coffee.
There were lemonade ice blocks which were soothing. I should have negotiated with the BMTU to bring in my own flavoured ice block or ice cream on a stick.
The nurses made a divine milkshake, so soft and cool.
The problem with the hospital food was I had to order it the day before and often I got the chefs choice, not what I ordered. A lot of it was dry and hard. It had to be eaten when it came, portions were too big and some times the smell of it put me off. I wanted small moist portions when I needed them not big portions when it arrived.
Unlike some others I never vomited and that was probably because I ate small portions of food that I could tolerate.
Generally I tried to eat a little often, not always achievable especially when I was feeling nauseous. There were times when I just did not want to eat, so I didn’t. I always ate sitting up as I felt this would help my digestive system and I could focus on eating even if it was slow.
Keeping my fluids up was difficult as mentioned previously; water became tasteless, bland, difficult to swallow and nausea effects. To prevent dehydration my fluids were monitored and maintained by being fed intravenously through my central line.
Hygiene is important so I always washed my hands before eating or drinking.
After going home the nausea, lack of taste and lack of appetite continued for about 3 weeks before a gradual change for the better.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Nausea

2009-08-27T21:26:00.003+12:00

During both autologous stem cell transplants for myeloma I have suffered from nausea. Who didn’t?
Nausea is a common side effect of high dose treatment and can be effectively controlled by anti-sickness drugs. It is my policy not to put up with side effects that can be controlled so I use them. There are different types available; you need to tell the nurses you need them and to help find the right one for you.
When I suffered nausea I wouldn’t eat so it was in my interest to take the anti-sickness drugs. For me, the drugs did tone nausea down but did not always eliminate it completely.
Effective for me have been Metamide, Zofran, Maxalon and Cyclizine.
Nausea first came to me during transplant about 6 hours after melphalan and stayed constant for 2 weeks controlled by anti-sickness drugs. After that it reduced slowly and did not disappear until 8 weeks after melphalan. That is when I no longer needed the drugs regularly though there were occasional outbreaks over the next 4 weeks controlled by drugs when needed.
When the nausea disappeared after 8 weeks I started to eat more and gain weight.

To help myself I:
Told the nurses when I was suffering nausea.
Took anti-sickness drugs at onset of nausea.
Kept the nurses informed if the anti-sickness drugs were ineffective.
Ate slowly and in small quantities.
Ate sitting up for good digestion.
Stayed sitting up for at least 30 minutes after meals.
Wore loose fitting clothes especially around the tummy.
I did find that ginger products can assist nausea. That was ginger beer, ginger ale, ginger crystals and ginger biscuits.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Hair loss

2009-08-23T21:15:00.005+12:00

Hair loss during myeloma stem cell transplant is inevitable as it is a side effect of the conditioning therapy.
Anticipating this and to keep hygienic, the day before entering the BMTU I had my head hair trimmed back to a number 2 and gave my beard a close trim.
Hair loss became noticeable about day 10 especially after showering. Eventually I lost 90% of my hair with only some minor body hair remaining. Be prepared for loss of hair from head, facial, eyebrows, nasal hair and public areas.
What surprised me was the loss of anal hair. I did not realise its presence until I wiped my anus and felt a different sensation.
Another surprise was the amount of heat loss from a shaven or bald head. To overcome this I always wore a cap or beanie. At night when it was cold I kept my beanie on. Myra knitted me a beanie in my Waikato rugby team colours. She knits loose letting a bit more air in so I wore that one when it became too hot for the others.
Having no hair and dry skin I maintained my moisturising all over including the scalp.
After transplant I always covered up or used sun block when outside. I have a fair complexion and can sun burn easily.
Hair re growth was first noticed 7 weeks after transplant day 1. My head hair grew back soft, golden and wavy. Pre transplant it was straight and grey/blonde. My beard grew back patchy so I shaved. It took a further 6 weeks before it grew back with normal coverage.
I was reluctant to look at myself in the mirror with a bald head; it wasn’t the me I was used to.
Two of my female myeloma friends were blessed with a stunning “chemo perm” after their ASCT, tight and curly. Both said it was a darker colour.
One amusing thing happened. Myra was helping me shower in the BMTU; I was having a difficult day feeling fatigued.
She said, “Look down there.”
“Where?” I replied
She said “Down there, the family jewels.”
So I looked, not a pretty sight at the best of times. It was disgusting, Looked like a plucked chicken, size 1. I made a mental note not to look again for a very long time.
There was an interesting reaction from our 2 grand children aged 8 and 5 after returning home from my second transplant in 2008. I had my cap on and asked if they would like to see my bald head. They said “Yes”. After taking my cap off there was a gasp and a step backwards, they did not like to see Grandad with no hair so the cap went back on.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
ASCT: Autologous stem cell transplant.
BMTU: Bone marrow transplant unit.

Myeloma transplant - Emotions

2009-08-20T21:11:00.003+12:00

My emotions during my stem cell transplant for myeloma caught me by surprise. Others had told me to expect emotions, tears, feeling up and down, mainly because of medication, treatment and what I was going through. What I didn’t expect was how strong and unpredictable those emotions were. Perhaps it was a male thing, testosterone breakdown?
I chose to let the emotions flow, it was not necessary to be strong.
There were changes to myself and my normal routines during transplant that may have prompted emotions.

Loss of independence, having to rely on others.
Leaving my modesty at the door.
Isolation, being “locked away” for 3 weeks.
Getting used to hospital routine.
Physical changes to my body.
Treatment and steroids/chemotherapy side effects.
My focus on what I was there for.
Having to constantly practice good hygiene to stay clean.

Some mornings when Myra came in I was so overwhelmed to see her I burst into tears.
During my first transplant George Harrison of the Beatles fame died. Watching it on TV news that night I felt huge grief resulting in a spontaneous outburst of tears.
What I missed was the intimacy emotions, holding hands, and a cuddle. For hygiene reasons I had to stay “clean”. So we washed our hands to hold hands and had a quick embrace at greeting and leaving.
Myra was great, she reads me well and guided me through my emotion and was aware of her emotional needs as well.
By choosing to limit visitors my evenings became lonely, that was a mistake. The evening was a time that I did need company, the mind wandered as I became bored.
Idle time, head space time, not good.
Be prepared for mind games, it’s a way of coping. The challenge is to stay on top, don’t let the evils or negative thoughts take over. Plan to be positive, have some sayings written down to repeat in you mind.
Be prepared to change plans to cope better. Have support organized pre-transplant to help with that.
If you have faith, call on your faith, have some favourite scriptures on hand.
“The Lord nurses them when they are sick and restores them to health.” Psalm 41:1

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Dry skin

2009-08-17T20:59:00.003+12:00

Chemotherapy, effects of stem cell transplant and air conditioning are causes of dry skin. For me this was on the face and back of hands and to a lesser extent on my legs. During transplant I used the recommended moisturiser and soaps daily and a lip balm day and night. Keeping my fluids up during transplant to help dehydration was difficult needing me to be given fluids intravenously.
Dry skin continued for about 6 months after both transplants then slowly reduced but is still present. After experimenting with moisturisers I now use an Emu oil based moisturiser which suits my dry skin. It seems to penetrate deeper and lasts longer.

Sid uses lippy!
Yes it’s true, Sid uses lipstick. Well lip balm, still the same?
All my life I have had to be careful in the outdoors due to my fair complexion. Too much sun or wind sees my lips dry out, crack and start to develop cold sores or chaffed lips.
Since myeloma arrived I have regularly used a lip balm to keep my lips moist.
While on chemotherapy or in hospital I used my lip balm three or four times a day. Now it’s several times a week or when outside.
Since using my lippy regularly I have not had cracked lips or cold sores.
I favour the flavoured lip balm, strawberry or lemon.
Excuse me now; I need to apply my lippy.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Diarrhoea

2009-08-14T20:37:00.004+12:00

Anyone I spoke to who has had a myeloma stem cell transplant had a story and warning about diarrhoea and they were right. Transplant diarrhoea is a bit like sex, you have to experience it to believe it.
High dose treatment including melphalan can cause damage to the lining of your bowel wall. Symptoms include cramping, bloating, wind and diarrhoea.
My diarrhoea started on day 4 and it wasn’t until day 18 that I noticed I was getting back to normal. There were still loose motions, the bowels were not so rumbling and there was more time between motions. In between transplant days 4 and 18 I experienced a rumbling tummy, lots of wind and continual diarrhoea. There was no control over the diarrhoea, once it started it was anytime anywhere, even a cough or a laugh was enough for a movement.
Pay particular attention to hygiene down there where the sun does not shine, the bum can become sore. I found baby wipes were less abrasive than conventional toilet paper. Your hospital may have an approved wipe, ask, it’s your bum not there’s.
My transplant unit had bidets which gave another option for good hygiene.
When my bum did get tender I asked the nurses to have a look for rash or broken skin and to apply a barrier cream.
During my second transplant I had an arm in a sling and that combined with myeloma pain made it difficult to get out of bed in a hurry so I was given incontinence pads, a marvellous invention. Again I paid particular attention to hygiene and changed the pads regularly. The nurses helped all that. At first I found that difficult, a loss of independence. One of the nurses gave me a good nurse to patient talk about what their role was, accept that there were things I could not do and to let others do it for me, that was their job. Another lesson on life learnt that day.

Final comment, transplant diarrhoea: It will happen, pay particular attention to hygiene, think positive, and think of it as the cancer leaving your body.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link.]

Myeloma transplant - Stem cell infusion

2009-08-11T22:37:00.002+12:00

The stem cell infusion for my myeloma stem cell transplant was an anti climax, apparently a common reaction.
The day before stem cell infusion I was given the conditioning therapy of high dose melphalan and dexamethasone.
At mid-day on stem cell infusion day I welcomed my stem cells as they were bought into my room, all details and administration checked and closed off. The bag of stem cells were connected up to my central line letting the process begin.
It was up to me to acknowledge the significance of the occasion, a second chance.
This I did by welcoming my stem cells back into my body telling them they were my heroes as they came in through the central line.
Other transplant patients have told me they recited poetry that had meaning to them or read some relevant scriptures. My NZ Army veteran friend said he played military music relating to an army marching into battle.
Other than a bit of light headiness there was no fuss, no drama.
My temperature, pulse and blood pressure were monitored, nothing outside normal.
We were told the preservatives in the stem cells would leave a smell in the room for several days. I smelt nothing. Myra could smell a corn like odour for 2 days.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Visualisation

2009-08-08T14:33:00.003+12:00

When talking to another myeloma transplant patient he mentioned that he had used a visualisation scenario during his myeloma transplant. Being a NZ Army veteran he used a battle theme complete with appropriate military music.
Having used visualisation before I decided yes, I can visualisation during my transplant.
I enjoy the outdoors, walking, the bush (USA trails); this was to be my theme.
My vision was standing on the edge of a cliff looking down at a pathway that descended into a valley. At the bottom of the valley there was a swamp with hidden obstacles. Across the swamp was another pathway, the way out, this pathway ascended to the other side. Beyond that in the distance was a huge golden archway, where the grass was green, birds were chirping and bone pain was forbidden. That golden archway was my goal.
What does all this mean?

Standing on the edge of a cliff.
This was the beginning of my transplant. The planning was complete; let the myeloma transplant journey begin.
Walking down into the valley.
As my white counts dropped I would descend down to the bottom of the valley. The pathway was meandering and undulating being the variables of treatment.
In the swamp with hidden obstacles.
That was the low point, white counts at their lowest and mucositis was active. I was vulnerable, wading through the swamp the hidden obstacles being the unknown.
The pathway up.
White counts were rising, I could start the ascent. Similar to the descent, the pathway was meandering and undulating being the variables of treatment.
At the top on the other side.
Discharge day, I was at the end of my transplant. Back home recovering, setting my sights on the golden archway.
The golden archway.
The golden archway represented my post transplant 100 day test results. I visualised successful test results allowing me to walk through the golden archway into the plateau stage. Back to good health, the start of the golden years.

All this was written down to be read and visualised during transplant. Myra was up to speed and shared the visualisation helping me through the difficult stages.
Did it help me?
Well, I believe it did. It gave me another coping tool, another focus for my mind, a journey through transplant. My goal was the golden archway, the end result, success.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Caregiver

2009-08-05T23:15:00.003+12:00

During transplant I needed a minder, an organizer, a caregiver, someone to look after all non medical matters that arose or needed attention during treatment. Of course there was only one person capable of all that, my wife Myra, that’s her occupation. What a peace of mind it was when she said, “Yes, I’ll do that”, and I remain eternally grateful to her.
Her role was invaluable. Though it was my transplant it wasn’t to be all Sid, this was a team effort. We talked it over beforehand, her fears, pressures, the downside, where she would need support and help. How could she take time out and recharge her batteries. Myra had to rearrange her life for 4 weeks, organize time off work. We organized a back up plan if she was sick and had other family members available to help when required.
Myra had to do what I could not do. In the BMTU I lost my independence, needed help and as it turned out was completely wasted for several days incapable of doing anything.
What were my needs, how did I want Myra to help?
Food: Covered in detail in a later posting. That was a big task. We were forewarned that hospital food was inadequate. During transplant Myra prepared and organized palatable food and liquids all approved by the hospital. Where it was stored and how I could access the food when she was not there.
Laundry: Myra did my laundry keeping 3 days ahead. I wanted to use my own pyjamas and underwear as much as possible (a feel good factor) though resorted to hospital issue during bad diarrhea times.
Exercise: I had an exercise programme by the hospital physiotherapist to follow, the aim being not to loose too much condition. Myra encouraged me when the fatigue set in. She kicked my butt for my own good.
Emotions: I needed emotional support, encouragement and monitoring. Making sure I expressed my emotions and did not ignore them. She kept me talking.
Observation: One of Myra’s strengths, observe my attitude, emotions, reactions, moods, health. Keep in touch with the nurses about her observations. She was first to pick up on several treatment reactions.
Diary: I keep a daily medical diary. On the days I couldn’t she would keep the diary up to date.
Communication: Keeping others up to date on my progress. This she delegated out. Several key people were kept up to date and they passed on information to others by phone, text and email.
Networking: Ward matters, talking to the nurses, other patients and caregivers, sharing knowledge and what’s happening in the ward. Creating a friendly environment. As Myra said, “It’s not all treatment, we still have to live.”
Home: Attend to mail, email, keep the home running, and pay the bills.
Clothing: Bring in additional clothing when needed.
Coordination: Coordinating my release, transport home, first week at home and transport to daystay until I could drive myself. (Myra does not drive).
Having Myra as a caregiver during my transplant was a success.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2. [Part 2 link]

Myeloma transplant - Planning

2009-08-02T12:14:00.004+12:00

My myeloma stem cell transplants have been very demanding, physically and emotionally.
As explained in my pre-transplant planning posting I spoke to other transplant patients, read about transplants extensively and obtained the transplant protocol and procedures from the BMTU team. No surprises, I wanted to stack all the odds in my favour so I could enter the BMTU full of confidence and knowledge.
It was anticipated that I would spend up to 3 weeks in the BMTU, I was in for 25 days. A 4 day fever and problems with the catheter removal delayed discharge.
Myra does not drive so I requested that I stay at the hospital and not go home during the early stages.
When I moved into the BMTU it was to be home for the next 3 weeks or thereabouts so I quickly became familiar with the unit, room and facilities before the “wipe out” days commence, then it would be too late. This includes the bathroom and the communal kitchen. It’s different to home. I set up the TV, DVD, CD, and radio for my own use, TV and radio was to be my contact with the outside world. How did they work, tried them all out, how does the remote control function. There was an internet connection but I did not have a laptop so passed on that.
What’s in the kitchen? Is there a toaster, microwave or fridge? How can I make a cup of coffee or tea? What food is free? Where do I store my food? How do I label it?
I was told as my white counts dropped I would became fatigued and sleep more than usual. Sudoku is a favourite pastime of mine but a few days after the fatigue started the Sudoku stopped so it was mental fatigue as well as physical. There was an improvement about day 18 when Sudoku recommenced but it wasn’t until I had been home for two weeks that I could notice a good improvement. A few books and magazines came with me but suffered the same fate as Sudoku.
As I did not know what my condition would be during transplant I chose not to have visitors or incoming phone calls except family and a few invited friends. I wasn’t there to get my toenails cut, I wasn’t there to entertain people, it’s my illness, my treatment, and I wanted to focus on me. It was a time to be selfish.
I was advised to take one day at a time during transplant, good advice that I recommend. I often split my time into morning, afternoon, evening. When the going got tough that became one hour at a time.
Myra happily took on the task of contact person phoning and emailing others of my progress. A small network passed this on from her information. Family, friends and neighbours were told what was happening prior to my admission and who to contact for information. It worked well for me though a people person or an extrovert may choose to do it differently. The only downside was I found the evenings a bit lonely.
Physically I had maintained my exercise routine and continued walking up to admission day. The hospital physio had prepared a programme to use during my stay to limit the loss of condition.
Myra had prepared food, laundry, communications and home matters.
The dietician had briefed us on suitable food and drinks.
My personal items: soap, shampoo, moisturiser, lip balm had been purchased new, mild and non-perfumed as requested by the BMTU nurse.

The planning worked well, only two surprises.
First was a four day fever with one day being a wipe out when I was fatigued to the max barely able to support myself.
Second was my catheter removal, that was a drama. Normally the nurse would remove it by pulling it out by hand. Unfortunately my skin had adhered to the plastic tube requiring a surgeon to surgically remove it delaying my discharge for two days.
Diarrhoea was worse and continued longer than anticipated.
My mouth and throat were better than anticipated mainly due to my strict mouth wash routine.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
BMTU: Bone marrow transplant unit.

Central vein occlusion

2009-07-30T20:36:00.003+12:00

A month after finishing my final VAD cycle for myeloma and 2 days after my stem cell harvest I developed blurred vision in my left eye. Harvest link
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the left eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My left eye improved and returned to normal.
Central vein occlusion is associated with abnormalities of blood flow and can be caused by systemic disease processes including multiple myeloma, protein C and S deficiency. [Source: causes link] I have read elsewhere but can’t find the source that the use of warfarin may contribute as well.
At diagnose (June 2001) I suffered a DVT in my right calf and was given warfarin therapy. DVT link
It was noted in my medical notes that the left eye central vein occlusion was felt to be secondary to my hypercoagulable state as a consequence of myeloma.

My sequence of events at time of blurred vision was:
Saturday 28th Oct: Warfarin therapy stopped. Low weight heparin commenced.
Wednesday 31st Oct: Apheresis line inserted.
Thursday 1st Nov: Stem cell harvest day 1 of 2.
Friday 2nd Nov: Stem cell harvest day 2 of 2.
Sunday 4th Nov: Blurred vision left eye first noticed.
Monday 5th Nov: Warfarin therapy recommenced.
Wednesday 7th Nov: Heparin stopped.

Sid’s theory on reasons why:
Two days of stem cell harvest moved my blood around like in a washing machine, disturbed the blood cells causing some coagulation to move into the fine blood vessels of the left eye.

Three and a half years later (April 2005) I developed blurred vision in my right eye.
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the right eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My right eye improved and returned to normal.
Can’t blame the stem cell harvest this time.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link.]

Glossary:
Hypercoagulable state: A hypercoagulable state is the medical term for a condition in which there is an abnormally increased tendency toward blood clotting (coagulation).
DVT: Deep vein thrombosis.

Myeloma transplant - Stem cell collection

2009-07-27T22:11:00.002+12:00

Before my transplant could commence I had to have my own stem cell collected/harvested.
Stem cells normally live in the bone marrow. They can be encouraged to move out of the bone marrow and into the blood stream from where they can be collected. This process is called “stem cell mobilization” and usually involves the use of stem cell growth factors (e.g. G-CFS) in combination with chemotherapy.
[Source NZ Leukaemia and Blood foundation]
To commence the process I was given chemotherapy (cyclophosphamide) which gave me the normal nausea for a few days.
This was followed 5 days later by G-CSF daily injections by Myra to stimulate the stem cells to multiply eventually moving out of the bone marrow into the blood stream for collection. [Peripheral blood stem cell mobilization and collection]. Daily blood tests were now required to find the optimum time for stem cell collection.
An apheresis line [Central vein catheter in chest wall] was inserted into my chest for stem cell collection and also used during my ASCT. My catheter was inserted into a large vein in my chest then travelled down the vein into the top of my heart. It had 2 lumens (thin plastic tubes) an inlet and outlet. The nurses flushed my lumens and changed the dressings regularly to prevent infection. It was used during ASCT for fluids, chemotherapy, antibiotics and other drugs, blood and platelet transfusions, stem cell infusion. My veins are thin and hard to find so it was a relief to know all was being done down the central line eliminating the need for constant needles.
During the night before my stem cell harvest I experienced the most intense pain I have ever felt. Commencing about 1.00 am the pain was in my pelvis, top of legs and lower back. So intense I could not lie in bed or sit, only stand rigid unable to move. It bought me to a standstill for 30 minutes eventually disappearing after an hour. Myra phoned the hospital who advised panadol or morphine. This had no effect.
I have since read that Neupogen used to mobilize the stem cells usually causes mild to severe bone pain as the marrow goes into overdrive producing more blood and stem cells. This would have been the intense pain I experienced.
If you are reading this and about to have a peripheral blood stem cell mobilization and collection, please discuss the possibility of mobilisation pain and how to control it with your medical team. It slipped under my radar causing me great distress.
The following day after daily blood tests the hospital phoned and said the time was right for my day one of two stem cell harvests. All went well, no dramas. It took four hours, left me feeling tired, I was in bed asleep at 8.00 pm. Overnight I experienced more intense pain but not as intense as the first night. Next day was day two of stem cell harvest, again no dramas. Over the two days there were enough stem cells collected for two transplants. These were taken away for tests and to put in frozen storage.
Two days after the second stem cell collection I suffered blurred vision in my right eye resulting in a retina vein inclusion explained in the next posting.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Here.]

Glossary:
ASCT: Autologous stem cell transplant.
G-CSF: granulocyte – colony stimulating factor.

Myeloma transplant - Pre-transplant planning

2009-07-24T21:01:00.004+12:00

Once the transplant decision was made my planning began.
I spoke to other transplant patients, read about transplants extensively and obtained information from the transplant team, nurses and doctors as I wanted to know everything that could happen so if something did happen I new why, what it was and how to cope. No surprises, I wanted to stack all the odds in my favour. I couldn’t see the point in having major medical treatment, life saving treatment without knowing what, why, how, it’s part of controlling ones own destiny. All that information helped me prepare, plan and focus for what was coming up. I could visualise the whole process and this included pre transplant, the transplant and the recovery period at home. This helped in my mental preparation. I have used visualisation, mental preparation and positive affirmation before with success.
The most practical advice I received came from listening to and reading about other myeloma transplant patients, their story, and their experience. Their personal knowledge of what it felt like, how their body reacted, their emotions and feelings, what happened, what didn’t happen and what was unexpected.
I split my planning into three stages.
Pre transplant (this posting)
Transplant
Recovery

Your local hospital, transplant team and support team will give you handouts, booklets, DVD and access to excellent information of the whole transplant process. More information can be obtained from the internet, use your favourite myeloma web reference.

Pre transplant support
Meeting with my BMTU nurse introduced me to pre transplant information and my transplant support team.
I welcomed the new people into “Team Sid” and the Team Sid philosophy emphasising they were all on my side, in my team working together helping me.
My support team comprised:
Transplant coordinator
Transplant nurse
BMTU nurse
Registrar
Consultants.
Dietician
Pharmacist
Physiotherapist
Social worker
Cancer society; liaison nurse and counselling.
Leukaemia and blood support.
Caregiver, Myra.
GP General practitioner (my Doctor)

Pre transplant medical tests
Meeting with my BMTU nurse introduced me to pre transplant information on all the medical tests required.
Many tests and form filling, some continuing or repeated during transplant. My attitude was let’s do it. Tests are to confirm what is OK and to find if any thing is amiss, that’s all in my interest. Being inquisitive I learnt what the tests were for, followed the procedures with interest, enjoyed the moment meeting some interesting and very professional people along the way. I made it a positive experience. Part of my myeloma journey.
These tests included;
Dental check-up
24 hour urine test
Chest x-ray
Heart function electrocardiogram (ECG)
Lung function test
Bone marrow biopsy
Blood tests. Full blood count, kidney, liver, renal, thyroid
Clotting screen
Iron,
Blood glucose, virus screening

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Here.]

Myeloma transplant - Preparation

2009-07-21T20:12:00.005+12:00

This is my story of my autologous stem cell transplant for myeloma at Auckland Hospital New Zealand bone marrow transplant unit December 2001. What my protocol was, how I planned it all, what my reaction was, how I coped, how I recovered and what help I can pass on to others. After a successful transplant I relapsed in 2007 and had a second transplant in 2008.
My story, my illness, my body, my medication, my transplant, others may have a different story.

At the time of my diagnose (2001) the conventional treatment in New Zealand for myeloma was chemotherapy, there weren’t the treatment options available like there are now (2009). Those considered healthy enough for a stem cell transplant had VAD followed by the transplant. Others had chemotherapy and its consequences.
My condition was serious, IgG kappa stage III with extensive bone involvement. [Test results at diagnose]. In spite of that I was considered reasonably healthy, a good candidate for a stem cell transplant, so after discussions on current and future treatment options with my medical team I chose VAD plus transplant. Natural remedies and alternate treatments were considered by me but I felt it was too late for those to be effective leaving me putting my trust in conventional treatment. Following my transplant I changed to a low GI diet, eliminated rubbish food, eliminated alcohol, increased fluids and juices, use selected vitamins, reduced stress and continued exercise to suit my condition. After a successful transplant I had six years myeloma free.

From my initial research into stem cell transplants for myeloma, I learnt that other patients had a varied reaction to their transplant experience. Some have had it easy, no major problems, able to spend a minimal time in hospital, more time at home with a short recovery period then back to work early. At the opposite end others have struggled with fatigue, nausea and vomiting, diarrhoea, mucositis, rash, fever, kidney problems, pneumonia and more. Fatigue often continuing during a long recovery period taking up to 6 months to recover. Most patients vary in between those two extremes.
Physical condition, type of myeloma, planning and preparation, personal attitude, mental toughness, and the ability to tolerate melphalan and other treatment medication all contribute.
Except for how I tolerated VAD there was nothing available to indicate to me how I would cope so my preparation was based on a worst case scenario though being an optimistic person hoped I for an easy ride.
The treatment protocol may vary in different countries and hospitals and according to a patient’s health status.

This is the first of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Here.]

Summary of Part 1 "The beginning"

2009-07-18T21:42:00.014+12:00

This concludes Sid’s multiple myeloma journey part 1 “the beginning”, part 1 of 6.
It has been an interesting exercise revisiting my diaries and thoughts and sharing them on this blog. What a life changing journey it has been.
There have been 40 postings in part 1, here are 18 of the posting highlights of my blog part 1, or as Myra says, “The juicy bits”. The remainder of the postings can be found in the labels section on the left of my blog.
Click on the red title links to go to the posting highlighted below.

Diagnose

Summary June 2001 to January 2009
A chronological reading of my myeloma journey over that time all in one place made me realise myeloma is not a simple illness, it keeps coming. The goal is to limit its progress.

Pre diagnose
My condition before diagnose. I should have been less optimistic and listened to others.

Emotions

You have cancer
How I coped when I was told, “Sid, you have multiple myeloma. It’s a cancer of the blood. YOU HAVE CANCER”.

Confronting death from myeloma
Myeloma, a cancer that has no cure. How I confronted death.

Myeloma anger
Why me? I was angry that this cancer invaded my body, an unwelcome intruder.
I had to express and release my anger.

Inspiration

Decision made to be a myeloma survivor
I quickly came to the conclusion that I wanted to be a myeloma survivor, there was no other option. This was the beginning of my way forward.

Elizabeth
An inspiration, the first myeloma survivor I met and she had been living with myeloma for 14 years.

Survival tools

Myeloma support group
My lifeline, being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.

Team Sid, a way forward
As part of my way forward to myeloma survival I created “Team Sid”, a network of help and support for medical, emotional and logistical reasons.

Positive affirmations
A survival tool to give me inspiration. “If I can say it, I can do it.”

A positive attitude to survive myeloma
“Success is a by product of a positive attitude”. Another survivor tool.

Treatment

Myeloma bone pain
My worst aspect of myeloma, bone pain, it hurts. Oh the relief when it went away.

Morphine for myeloma bone pain
Pain relief, how I used it, withdrawal symptoms.

My VAD treatment for myeloma
Summary of my initial treatment VAD.

Bisphosphonates for myeloma
A summary of the bisphosphonate Aredia that I have monthly to treat my bones.

Dexamethasone for myeloma, side effects
Dexamethasone, the steroid that I have used. My seek and destroy missile and the side effects it has given me.

Humour

There’s a rat eating my hand
Cancer humour, an amusing story that happened to me. Even in ill health and adversity we must remember and enjoy our humorous moments.

Urine sample for myeloma, no worries
The humour behind trying to pass a reluctant urine sample. It was all my mother’s fault.

Hot news. Join me on Sid’s multiple myeloma journey, part 2 “The Transplant” starting next week.

Health update July 2009

2009-07-09T20:58:00.004+12:00

A Sid update July 2009.
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good. Then my 3 monthly tests in May 09 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
I took an emotional hit. Based on the previous transplant I was expecting 3 years of clean health. Perhaps my expectations were too high, after all it is myeloma.
So I had to deal with my anger, my emotions, my disappointment, my shattered dreams, pick myself up off the floor, bring it to a conclusion and move on. Now it's sleeves rolled up ready for the next stage, more treatment.
After discussing the options with my haematologist it was decided to have chemotherapy, cyclophosphamide and dexamethasone. That started on Tuesday 1st July 09 and will run for a 28 day cycle when we view the results and reassess where we go from there.
I did not want Thalidomide treatment because of the peripheral neuropathy it caused me at a low 50mg dose over 15 moths previously. Some of that PN is still in my feet. The other options Velcade and Revlimide have Pharmac and funding issues in NZ. I really do want to use those treatments even if it is a trial or if I can get them on compassionate grounds. An explanation of that is at the bottom of this posting. That will be on the table for discussion at next appointment.
Some times I wish I lived in USA to get access to all the new treatments and trials that are available there.
In recent weeks I have suffered from an inflamed sternum up at the top of my chest. It is very painful to cough, feels like a knife in my chest. There has been x-rays which radiology said showed nothing and I am on a pain killer Paradex. If there is no change or if it does not improve I will insist on a scan.

Bortezomib (Velcade) and Lenalidomide (Revlimide) status in New Zealand.
Source http://www.lifebloodlive.org.nz/section/ask-the-experts
Q: Velcade is only available in NZ within clinical trials of relapsed myeloma as a second or third line treatment. What steps are being taken for the use of Velcade in NZ to be upgraded?
A: Bortezomib ("Velcade") is registered and available for patients as second line therapy in New Zealand but it is not funded by the health system. This means that a patient would have to pay for the Velcade personally or through the private health care system. It is not a cheap drug. There are also trials available where the drug is supplied free but not all patients can enroll in these trials.
Pharmac are currently considering reimbursement of Velcade in the first relapse setting and we may hear about this in the near future. There is also currently an application with MEDSAFE to have bortezomib registered for first line use in myeloma and we should also hear about that in the near future.
Q: Revlimid, a thalidomide derivative, is not available in NZ. What steps are being taken to have Revlimid available for use in NZ as treatment for myeloma?
A: Lenalidomide ("Revlimid") is registered and available in New Zealand to be used in relapsed myeloma. However it is not funded through the public health system and so a patient would have to pay for the drug personally or through private health care. A submission to Pharmac to consider public funding for this drug will be put forward in June to be considered in August.

Glossary:
PHARMAC The Pharmaceutical Management Agency of New Zealand, PHARMAC, manages a list of subsidised pharmaceuticals, the Pharmaceutical Schedule, on behalf of the Crown. Pharmaceutical suppliers may apply to PHARMAC to have a medicine listed on the Pharmaceutical Schedule for subsidy.

Myeloma blogs 1

2009-07-01T22:13:00.003+12:00

If you are reading my blog (Sid’s multiple myeloma journey) you may be interested in other myeloma blogs. There are many ways to find these blogs.
Here are the three main sources that I use to access other myeloma blogs.

Planet myeloma
A myeloma blog roll created by Beth who is a myeloma legend, blogging since 2003.
At last count there were links to 36 myeloma blogs: June 2009
On the left of her blog roll are links to postings on listed blogs that have been created in the previous seven days, updated hourly.
I access planet myeloma daily to view the new postings.
Well done Beth, you have given the world wide myeloma family an excellent source of myeloma blogs.

Multiple myeloma forums
Created by Andy, April 2009.
On the home page is a list of featured blogs with a link to the entire myeloma blog collection, 35 so far: June 2009
While in myelomaforums web site have a look around. There is a good forum, featured articles, myeloma news, RSS feeds and much more.

Google
Access your Google
Type myeloma blogs/enter.

Or
Type myeloma blogs.
Pick down arrow at top
Select “more”
Select blogs.
For the latest postings pick “sort by date”.

Myeloma beginner's help

2009-06-28T20:17:00.008+12:00

The internet has a great source of information for newly diagnosed myeloma patients.
I recommend two articles found on the North Texas Myeloma support group web page. Unfortunately I cannot verify the date they were written or if they have been updated since publication, my emails were unanswered. Access the articles on the North Texas Myeloma support group web page by control/click the title.

Living successfully with multiple myeloma by Peter Tischler.
An informative article listing points that one must know and do to best ensure that one will survive myeloma with the quality of life one wants. I discovered Peter’s article in 2005, four years after my diagnose. Fortunately I had been doing most of what Peter suggests so just needed to fine tune my approach.
His main points are:
1. Take care of your kidneys.
2. Avoid infections.
3. Form a survivor team.
4. Don’t be a good patient.
5. Educate yourself. (this may be you, your partner or a family member)
6. Maintain your immune system.
7. Keep medical records.
8. Know your doctor’s limitations.
9. Early warning system – avoiding crises.

Myeloma 101 by Peter Tischler.
Myeloma 101 explains the basics of myeloma, diagnostic tests that are used and treatments for myeloma.
There are three levels of explanation: L1 simple explanation, L2 more detail, L3 more technical stuff.
Contents include:
Myeloma 101.
What is multiple myeloma?
The myeloma cell.
Myeloma protein.
The supporting cast.
How myeloma affects us.
Different types of myeloma.
Staging myeloma.
Testing – Blood tests.
Testing – Urine tests
Testing – Scans.
Testing – Other.
Treatment – Overview.
Treatment – Standard/frontline
Treatment – Maintenance.
Treatment – Transplants.

Myeloma anger

2009-06-25T20:41:00.002+12:00

People advised me to expect anger and an emotional roller coaster as I came to grips with having cancer (myeloma) and having to deal with some treatment side effects especially the steroid Dexamethasone.
The anger was there. Why me, what have I done wrong, I don’t have time for this, my dreams are shattered, I have so much to achieve, and my plans for the future have been destroyed.
Dexamethasone mood swings up and down, go away I don’t need you, come back I do need you, I feel great, I feel rotten, where is my head space today? Just put a bucket over my head and leave me alone. What a roller coaster ride.
I was determined not to let any anger or frustration explode into a verbal tirade or abuse of others. A philosophy of my life is zero tolerance of abuse in any form. This I achieve by neither giving or receiving abuse. Treat others as I want them to treat me. That was going to be challenged. How could I overcome it?
There had to be a safety valve, several safety valves. One of mine was watching sport on TV. A favourite pastime that was taken to a higher level of participation. I let loose on any sport any time. When my teams were playing my commentary and comments got louder and louder. A good release for me.
Talking to others by phone or in person helped. I found some good friends who sat beside me and listened, let me ramble on as I went through the anger process.
Myra played a big role there, listening then giving me her thoughts. There has always been trust and honesty between us. That proved invaluable. Nothing was left out.
Writing has always flowed freely for me. Putting my feelings on paper then throwing it away was easy. A good release however I wish I had kept them.
The urge for anger release by physical action like hitting out was not there, I am not that type of person. With my bones being damaged that could have been dangerous.
As my condition improved I found walking became a good release. Lots of thoughts went through my mind. I enjoyed stretching my physical boundaries especially on the hills leaving me a little empty.
I knew the anger would come to an end; it was a process I had to go through.
It was part of my healing.

Confronting death from myeloma

2009-06-22T21:55:00.003+12:00

Multiple myeloma, a cancer that has no cure, prognosis varies, average 3 to 5 years. (2001)
When I was first diagnosed with myeloma in 2001 it was explained to me that myeloma can be treated successfully slowing down progression. There would be cycles of treatment, plateau stage (remission) and relapse. Eventually I would succumb to the effects of myeloma in some form; pneumonia, kidney failure or bone destruction were mentioned as common causes of death by myeloma.
No cure, no cure, no cure, death, death, death, echoes in my mind.
No cure and ultimately death were issues that I had to deal with. Death is generally a consequence of myeloma.
Initially there was a problem; I could not get my head around the no cure/death issue. Maybe it was part of my denial, the “not me” syndrome.
Aged 53, happily married, fully employed in a challenging job, my life was sweet. Except for deterioration in the previous 6 months I was fit, healthy, felt bullet proof. Death was not an issue I ever considered. Death happened to other people. I was too busy, too happy for death.
There was a problem, I had to get realistic, I could ignore death letting it nag away at me or I could deal with it. I chose to deal with it.
With help from the NZ Cancer Society counselling service I confronted death. Where was death, I could not see it, never had to. Death to me was hiding around a corner of a building. My aim was to walk around the corner, find death, grip it strongly and drag it back with me out into open spaces. There I could confront it, talk to it and ask questions, talk about it, a new experience for me. It took a while, lots of emotion, lots of tears, lots of help.
The process raised questions like: what happens when I die, where do I go after death, somewhere or nowhere, is there life after death, what are my religious beliefs, why me for this illness and death? Am I prepared for death, is my will up to date, are my finances in order? What sort of funeral service do I want, am I to be buried or cremated? And many more questions.
Was I premature in discussing all this in the first few months after diagnose? No, I don’t think so. It cleared the air for me , part of the process of accepting myeloma and allowed me to move forward focussing on survival.
On the question of religious belief. My faith has grown during my illness, changing from living in a Christian like manner to recently becoming a committed Christian. The power of prayer has amazed me. I felt very humble during my difficult times when hearing of the many groups and individuals praying for me, it made a difference, thank you.

Hey, it's me

2009-06-19T21:21:00.003+12:00

Near the end of my VAD treatment I had an interesting experience in a shopping mall.
We had received my latest test results after the third cycle of VAD. Results were positive, IgG was dropping, and I was feeling healthier, less bone pain, so to celebrate we went to the shopping mall for a coffee. One thing I always try to do; celebrate success
As we were about to leave we met acquaintances of Myra, an older couple. A conversation took place as if I did not exist. I was ignored, the invisible man, being talked around. Sid was “he or him” cancer was “it”. They had a problem, probably a generation thing, unable to face a person with cancer. That C word again.
“Hey it’s me, I’m here, look at me” I said. Eye contact was still avoided.
Stuff them, that’s their hang up.
All I ask is stand by me, stand next to me and treat me as normal. My physical appearance may have changed during treatment, yes I do have cancer but I am living with cancer not dying from cancer. I am still me. I need your support.
It was with great restraint that I avoided giving them a single digit salute. (My mum taught me to respect older people).
What I did learn was involve myself in conversation more. From the beginning make eye contact, smile and ask if they want to listen.

Dexamethasone for myeloma, side effects

2009-06-17T18:31:00.001+12:00

Dexamethasone is a synthetic adrenocortial steroid. Adrenocortial steroids are also known as glucocorticosteroids or corticosteroids. Big words you don’t want to pronounce while eating breakfast cereal. If you want to know more do a Google search.
When used in the treatment of myeloma dexamethasone can trigger the destruction of myeloma cells. More information from IMF here: Source
I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone has many side effects. Side effects that I suffered were sleep disturbance, verbal aggression, mood swings and some minor effects.
Sleep disturbance: I would go to sleep in the evening for about 30 minutes then wake up wide awake ready to take on the world. From trial and error there wasn’t much point in going back to bed for at least 4 to 5 hours. If I was lucky and did go to sleep longer, sleep would only last 4 hours when I would wake early morning wide awake really buzzing, no more sleep.
As advised by my doctor I was taking the dexamethasone at breakfast, it didn’t seem to help the sleep disturbance.
To take advantage of my extra time awake I would get out of bed so as not to disturb Myra, get warm and comfortable to read, watch TV, listen to music or the radio or get on the computer. When my bone pain reduced I found walking the floor helped by making me feel tired.
The use of a sleeping pill did help.
Verbal aggression: This was interesting. Normally I am laid back, an introvert, keep calm, not prone to verbal outbursts. Myra pointed out to me that I was becoming very opinionated, loud and talking aggressively. For example, when driving any other driver was fair game. So many *#@$** wankers who got their *#@$** license from K-mart. My driving wasn’t aggressive, my comments were. Any politician on TV copped a gob full, right or wrong.
Once I realised what was happening I tried to tone it down but still had to get stress release so I still made comments while driving. My main verbal stress release was watching sport on TV, my favourite pastime. I let it all hang out, I loved it. Any one walking by must have thought we were having a domestic.
I called my verbal aggression “the other Sid”.
An important challenge for me was to acknowledge it, not let it impact on others or use it as an excuse for personal abuse. That’s why the stress release was important.
Mood swings: Not too bad, just feeling good then within 10 minutes feeling down. The sudden changes surprised me. This fluctuated during day and night. Sometimes I would mood down and stay down all day. It was never anything too deep, constant down or depression like others have told me, just up and down, up and down
Tearfulness was there, tears flowed spontaneously for reason or no reason even when feeling normal.
I kept the medical team informed but decided not to use any helpful medication that was offered unless it became worse, it didn’t.
Minor effects: During the week I was taking dexamethasone I suffered bouts of hiccups, some times for 2 hours.
During the third VAD cycle (second dexamethasone treatment) I experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.

Bisphosphonates for myeloma

2009-06-15T20:16:00.002+12:00

Bisphosphonates are drugs used to prevent or treat high calcium levels in myeloma.
Bisphosphonates work by “coating” the surface of your bones protecting them from the damaging effect of myeloma cells. By preventing bone destruction these drugs also help to reduce bone pain, the risk of bone fractures, hypercalcaemia (excess calcium in the blood) and strengthen the bones. Relief from bone pain improves physical activity which promotes bone strength and healing.
Bisphosphonates usually have minimal side effects; however they can cause the blood calcium to drop below normal levels causing muscle cramps or spasms. Occasionally patients may develop a fever after an intravenous infusion of a bisphosphonate. Other rare side effects include kidney damage and damage to the jaw bone (osteonecrosis of the jaw). Your Doctor may recommend a dental check up.
In New Zealand we use the bisphosphonate (pamidronate Aredia) given intravenously over 2 hours. It is available orally but not in New Zealand.
I was given Aredia monthly until my first stem cell transplant then resumed it about four months later.
The first time I received Aredia I suffered for several days the side effects of cold chills and flu like symptoms. This was also repeated at the second infusion a month later though not as bad. On the third infusion I only suffered minor flu like symptoms over night, on subsequent infusions nothing. Apparently if the infusion time is extended to 3 hours less side effects are experienced. My side effect symptoms were controlled by panadol.

VAD for myeloma, end of fourth cycle

2009-06-13T21:41:00.003+12:00

A summary of the end of my VAD cycle 4 (final cycle) Monday 8th October 2001, treatment for myeloma.
Another successful VAD and Aredia cycle.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
IgG at end of cycle 4 = 17.1 g/L
All other test results were normal.
There was no dexamethasone on this cycle.
Allopurin was stopped on day 9.
Again I suffered chemo induced nausea for 7 days with its associated disinterest in food. On day 8 I stopped the Maxolon and over the next few days my appetite increased.
During week 2 I developed a rash on my chest which cleared after 10 days. It was a fungal infection.
Bone pain had reduced considerably with no significant hot spots. My pain relief was Kapanol 10 morning and evening plus panadol every 4 hours. Kapanol will be stopped next month. Liquid morphine for break through was rarely used. I woke a few times at 5am with back pain that disappeared after panadol and a bit of moving around.
Physically I was much better, walking briskly, moving well and started gardening this month including light digging with a shovel.
A bone marrow biopsy was performed at the end of cycle 4.
Plasma 7% (June 12%)
Trephine 5% (June 10%)
At the end of cycle 4 I was considered to be in a state of stable partial remission and a discussion took place on what happens next, mainly the benefits of an autologous stem cell transplant. During VAD cycle 4 I had researched an ASCT and agreed for this to proceed.
Looking back over the 4 cycles, the first 2 were difficult with heavy nausea from chemo, continual bone pain and having to come to grips with cancer and emotions. The last 2 cycles were easier with nausea not so difficult and bone pain reducing. Dexamethasone side effects were a new experience especially the mood swings. Once I new what was happening I could cope.
I had put in place my way forward philosophy and "Team Sid", both important aspects of my myeloma survival.
My treatment option of VAD was in 2001. Treatment options for newly diagnosed myeloma now (2009) have changed.

Glossary.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.

VAD for myeloma, end of third cycle

2009-06-11T20:33:00.002+12:00

A summary of the end of my VAD cycle 3 Monday 10th September 2001, treatment for myeloma.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.

VAD for myeloma, end of second cycle

2009-06-09T21:41:00.004+12:00

A summary of the end of my VAD cycle 2 Monday 13th August 2001, treatment for myeloma.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.

VAD for myeloma, end of first cycle

2009-06-07T22:21:00.002+12:00

A summary of the end of my VAD cycle 1 Monday 16th July 2001, treatment for myeloma.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.

My VAD treatment for myeloma

2009-06-04T21:15:00.004+12:00

My initial treatment for myeloma in 2001 was VAD (Vincristine, Adriamycin, and Dexamethasone) and a bisphosphonate (pamidronate, Aredia). That was the conventional treatment for myeloma in New Zealand at that time especially if one was to continue on to a stem cell transplant. I had four cycles of VAD each over 28 days.
VINCRISTINE:
Vincristine is a chemotherapy drug used in combination with other drugs to treat myeloma by blocking cell growth by stopping cell division.
I was given 0.4mg of Vincristine intravenously on days 1 to 4 of each VAD 28 day cycle.
ADRIAMYCIN: Now called Doxorubicin
Adriamycin is a chemotherapy drug that is used to treat myeloma by bonding to the cancer cells DNA blocking an important enzyme and stopping divide and grow.
I was given 16mg of Adriamycin intravenously on days 1 to 4 of each VAD 28 day cycle.
DEXAMETHASONE:
Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone side effects experienced by me were sleep disturbance, verbal aggression and mood swings, all to be explained in a future posting.
BISPHOSPHONATE: Pamidronate, Aredia.
In myeloma bisphosphonate can delay and reduce the number of skeletal events and reduce bone pain. I was given 90mg of Aredia intravenously over two hours once a month. In the evening of the first infusion I suffered from a drop in body temperature, cold flushes and flue like symptoms. This continued for four days though reducing in severity daily. On subsequent monthly infusions I had no side effects. When discussing this with the hospital I was told this was a rare reaction and the remedy would have been to increase the infusion time to three hours.

In addition I was given other medication to overcome the side effects of VAD.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure. 30mg tablets each morning.
Bactrim: Used as an antibiotic. 1 tablet each morning and afternoon.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Zontac: Reduces the amount of acid in my stomach. Heals and prevents ulcers. 1 tablet morning and afternoon.
Tempazepan: A sleeping pill available to assist any anticipated Dexamethasone induced or any other sleep problems.
Chlorhexidine: mouthwash to be used morning and night to prevent mucositis; the inflammation of the lining of the mouth and throat which often occurs after high dose chemotherapy. From chemo day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I did not feel like it. No mouth issues arose.
Nilstat: an oral suspension advanced mouthwash to be used only if any mouth issues deteriorate. It was never used.
Coloxyl laxative. 2 per day if required to overcome constipation. It was used occasionally.

Myeloma, 8 year celebration

2009-06-02T20:14:00.003+12:00

My initial myeloma diagnose was on June 1st 2001, 8 years ago.
On my blog home page is a counter that says:
Time since diagnose June 1st 2001, 2922 days, 8 years 0 months 0 days.
I feel very humble to have achieved an 8 year survival of myeloma especially as initial prognosis was 3 to 5 years. I have benefited from medical progress.
Good planning, good support, good attitude, good treatment, good family, good luck and good love have all contributed.
All my myeloma friends who are no longer with me are remembered today with love and respect. They taught me so much.
To my wife Myra, thank you, I love you.
Today I celebrate, tomorrow I continue living with myeloma.

Morphine for myeloma bone pain

2009-05-26T20:41:00.002+12:00

When my GP told me I had multiple myeloma my pain relief was increased to morphine. The pain I was suffering was myeloma bone pain; multiple lesions, rib fractures and compressed vertebrae.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.

Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.

Myeloma bone pain

2009-05-24T20:44:00.001+12:00

My bone pain was typical myeloma bone pain, very painful and never ending.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.

A positive attitude to survive myeloma

2009-05-21T21:27:00.001+12:00

A positive attitude has always been one of my aspirations.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.

Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.

Positive affirmations

2009-05-19T20:58:00.001+12:00

A tool used during my myeloma treatment and recovery has been positive affirmations. Something I have often used throughout my life. Success will come when you impress the subconscious with the conviction you are a success. This is done by making an affirmation which clicks.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.

Blood tests for myeloma

2009-04-30T22:46:00.003+12:00

Blood tests are used to confirm diagnose of myeloma and to monitor the disease during treatment and plateau stage (remission).
I have requested that a copy of my results from med lab be mailed to me so I can prepare for my next appointment. It can be misleading to read my results in isolation so I look for trends over several readings. For long term history I have created a spreadsheet with all my results included.
In my case I was diagnosed June 1st 2001 with multiple myeloma stage III IgG Kappa.
The key indicators for me are:
Red blood cells.
Red cells contain haemoglobin and transport oxygen from the lungs to all parts of the body. Low haemoglobin will give me anaemia causing paleness, lack of energy, tiredness, shortness of breath, dizziness and fatigue.
I monitor haemoglobin; normal 130 to 175 gms/L. (01 June 2001 = 120) (24 Feb 2009 = 145)
White blood cells.
White blood cells are the soldiers that fight infection. If they drop below normal I will be at risk of infection. There are 5 main types of white blood cells. The 2 main ones I monitor are leucocytes and neutrophils. Leucocytes fight infections including chest, urinary, skin and produce antibodies. Neutrophils fight bacterial and fungal infections.
Leucocytes; normal 4.0 to 11.0 (01 June 2001 = 7.9 (24 Feb 2009 = 7.06)
Neutrophils; normal 2.2 to 7.5 (01 June 2001 = 6.64) (24 Feb 2009 = 5.31)
Platelets.
Platelets help to prevent and control bleeding. If platelets are too low my blood thins. This causes bruising and excessive or prolonged bleeding following minor cuts or injury. Platelets; normal 150 to 400 (01 June 2001 = 362) (24 Feb 2009 = 213)
Creatinine. (Renal, related to the kidney)
Creatinine is a waste product of muscle breakdown normally excreted by the kidneys. The level of Creatinine in the blood will be raised if the kidneys are not functioning properly. I drink 2 litres of fluid a day to keep my kidneys flushed,
Creatinine; normal 60 to 105 umol/L (01 June 2001 = 61) (24 Feb 2009 = 80)
Calcium.
Calcium reading tells me if my bones are being eaten by myeloma. When lytic lesions are being formed calcium is a by-product that can be detected in the blood.
Calcium; normal 2.10 to 2,60 mmol/L (24 Feb 2009 = 2.38)
Immunoglobulins.
Proteins produced by plasma cells, my indicator is IgG. A normal reading is between 7 to 16 g/L. When IgG rises into the 20’s I become concerned. When it reaches 35 myeloma has returned.
IgG; normal 7.0 to 16.0 g/L (01 June 2001 = 80) (24 Feb 2009 = 10.1)
Total protein; normal 66 to 84 g/L (01 June 2001 = 75) (24 feb 2009 = 76)
Total globulin; normal 22 to 38 g/L (01 June 2001 = 43) (24 Feb 2009 = 25)
Bence-Jones protein (BJP).
A protein found in the urine of many myeloma patients. BJP is a small molecule that can potentially damage my kidneys.
Casual total protein; normal 0 to 0.3 g/L (01 June 2001 = 0.4) (24 Feb 2009 = 0.04)
Casual Bence-Jones; (01 June 2001 = 0.3)(24 Feb 2009 = 0)

Glossary:
Anaemia. Deficiency of red blood cells which results in a reduced level of the oxygen carrying pigment haemoglobin in the blood.
Haemoglobin. The iron containing pigment in red cells, which carries oxygen around the body.
Lytic lesions. Holes in my bones caused by substances secreted by myeloma cells.
Neutrophils. The most common type of cell within the granulocyte group of white blood cells.

Team Sid, a way forward

2009-04-28T19:41:00.002+12:00

As part of my way forward to myeloma survival I created a team, “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
“Team Sid” comprised myself of course, my wife Myra, family, GP, Haematologist, Hospital day stay staff, cancer society, Leukaemia and Blood, work, neighbours and others when needed. My number one team member was Myra who is a trained caregiver, I had the best. More about Myra and others in another posting.
Being the Boss and chief administrator of “Team Sid” I compiled a list of contacts; contact name, designation, address, phone and email.
Another list was a” how to/what if” list, how to do anything that arose without panic. How to arrange transport if I could not drive myself, public transport timetables. How to use the St John’s ambulance service in an emergency. How to use the hospital shuttle bus. What to do if my temperature rose. Who to contact if I fell ill at home, etc, etc.
One of regular my tasks was to maintain my appointment book up to date. Every appointment and meeting was entered then added to the kitchen calendar as backup. Another task was to maintain a daily diary of how I felt, medication, anything that could be of use at appointments. Initially I did not realise the significance of recording my test results. My doctor and Haematologist gave them to me verbally. Later I learnt from a support group member that I could have the results posted to me. Once that commenced I created a spread sheet to record results electronically.
There were times when I could not cope due to health and side effect issues. Myra had been briefed on the lists so stepped in to take over my role...
“Team Sid” members were all told that I was living with myeloma and would recover to good health again. I led by example with my positive attitude, negativity was not to be tolerated.
“I will get better”.
By creating “Team Sid” I took an active role in my recovery giving me a sense of control over my illness.
On reflection the main benefit of “Team Sid” was organisation. Having all my contact and what if information up to date and in one place. A system I still follow today.

Urine sample for myeloma, no worries

2009-04-26T21:47:00.003+12:00

My first visit to the neighbourhood Med Lab for myeloma blood tests became a challenge.
When I was a little boy my Mum told me if I was going out I had to do three things before leaving the house. Put a clean handkerchief in my pocket, wear a clean pair of underwear and empty my bladder. Being the best behaved boy in our street, a very long street, and having always listened to my Mum I still do this today.
Armed with my blood test form, clean handkerchief in pocket, a clean pair of underwear on and empty bladder I drove to the Med Lab for the first time not really knowing what it was all about.
On arrival the nurse took my card then said” Mr Hider, you are required to give us a urine sample” and gave me the sample tube.
Looking bemused I said “What do I do with this?”
“Go to the toilet, you will find the instructions on the toilet wall.” She said.
Now, I have a self belief that I can do anything, learnt at a school in Hamilton, Maeroa Intermediate. “No worries” I said.
Off I went into the toilet to read the instructions and provide the sample.
Simple. Pass urine into the toilet. At mid-stream put some into the container provided. Fill the sample tube. Clean up. Hand the sample tube back to the nurse.
So I started the process……and waited……and waited……and waited. Nothing happened. This required drastic action, I shook it, jumped up and down……still nothing. Starting to panic I did the little boys trick, turned the basin taps on and waited……and waited……and waited. Again nothing happened.
Looking embarrassed I went back to the nurse to explain that I could not provide a urine sample. She gave me a stern look and a huge brown paper bag with a sample tube and container in and said “take this home, drink lots of water, try again then bring it back.”
It’s all Mum’s fault. That’s what happens when you listen to your mother.
On my next visit I was determined to be prepared so drank lots of water and did not leave home until I felt I was ready. Stopping off at the local shops for a newspaper I got delayed talking to a friend. By the time I arrived at the Med Lab I was busting for a wee. Getting out of the car and standing up I knew I was in trouble. Putting my hand in my pocket I manually manipulated my pressure relief valve to prevent an overflow.
When opening the Med Lab door my heart sank, oh no, standing room only putting me at the end of the queue. Sheepishly I approached the nurse and said” I need to pass a urine sample, NOW.”
She gave me a sample tube and very quickly my sample was back with her.
The moral of this story; don’t always do what your mother says.
Who said there’s no fun having cancer?

Myeloma support group

2009-04-24T20:29:00.002+12:00

Being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
My first visit to my myeloma support group was a revelation to me. At first I thought I was the only person in my city with this rare disease. To enter a room to be with a group of others with the same disease became overwhelming.
My new myeloma friends were talking about symptoms, bone pain, conditions and health problems that I was experiencing. Heads were nodding with acknowledgement as I explained my symptoms. They all knew what I was talking about. I was accepted as one of them. I felt normal.
Leaving that first meeting I felt a calm satisfaction that I had found some good friends with the same disease and a support system. It suited my approach to my way forward and has been an important part of my survival.
My support group has given me companionship and knowledge. The guest speakers have been informative. Listening to others pass on their story has given me a better understanding that myeloma is not the same for everyone. We may have the same disease; it effects us in different ways.
That’s why I say “my illness, my body, my treatment”.
Our caregivers are not overlooked, where would we be without them. They are welcome to come along to participate and support each other.
A down side to my myeloma support group is we are all living with multiple myeloma, a disease that has no cure. It can be treated and progression slowed down. Eventually most of the group will die from its effects in some way or another. I can’t hide from that, its reality.
When the first of my multiple myeloma friends died I was devastated. How I coped and what I learnt will be in another posting.
I do acknowledge that support groups are not for everyone. We all have different personalities, a different approach to life and to survival. Freedom to make our own choice is a fundamental of a free society. My choice is yes, a support group is what I want.

My myeloma support group is run by the Leukaemia and Blood Foundation (NZ).
www.leukaemia.org.nz
Free phone 0800151015. (New Zealand)
More about them in a later posting.

Elizabeth

2009-04-22T21:51:00.001+12:00

The first time I had chemotherapy as treatment for myeloma (June 2001) I was introduced to the “blue room”. There I had a selection of comfortable lazy boy chairs all colour blue, hence the name blue room.
Myra was with me for support. My nurse did the intravenous line and in went the chemotherapy and aredia for the first time accompanied by a little prayer on that significant occasion.
Sitting opposite me was an elderly lady receiving treatment, the only other patient in the room. Myra struck up a conversation like she always does and asked what her name and illness was.
“My name is Elizabeth and I am having my monthly infusion of aredia. I have multiple myeloma” she said. “I have been living with it for 14 years”.
Well, that was mind blowing. Here I was having never met another myeloma patient, thinking I was one of the few people to have this rare cancer, being told there is no cure, yet sitting opposite me was a lady with myeloma who has had it for 14 years!!!!!!
Elizabeth told us she went to the multiple myeloma support group where she received good support and companionship from patients with the same cancer. I had been told about the multiple myeloma support group by the cancer society and had intended to go to the next meeting.
This first meeting with Elizabeth confirmed to me my belief that I wanted to be a survivor.
Elizabeth became an inspiration to me and a very good friend.
Unfortunately Elizabeth passed away 3 years later after being a myeloma patient for 17 years.
In a corner of my heart there is a red rose for Elizabeth.

Chemotherapy: Treatment using anti-cancer drugs.
Aredia: A bisphosphonate, used to prevent or treat high calcium levels in cancer. Also useful in strengthening bones in multiple myeloma to prevent fractures and pain.

Needs assessor

2009-04-20T21:08:00.002+12:00

At my first appointment with my Haematologist he arranged for a visit by a local district health board nurse to assess my needs.
My first need was a Lotto win. No luck there, they could not help with that.
The nurse came and assessed my condition, mobility, asked questions about how I was managing and explained what services they could offer.
We live in a two story town house. She asked about the stairs, they were no problems
for me as long as I took them slowly. The stairs were used as an important tool in my physical recovery. No obstacles inside or out were found.
Transport was not a big issue as I could still drive. Myra does not drive so options for when I could not drive were discussed. Myra was caring for me with showering, dressing and undressing, meals and doing the housework like only she can do.
After assessment it was decided that I would be provided with a shower chair and a bed lever and access to a physiotherapist for advice on exercise.
We have a large size shower with a slide shower complete with detachable head. The shower chair made it easier for me to shower and Myra to assist. Mobility and being unable to reach around my back or bend over were my problems.
Getting in and out of bed was a painful struggle. Myra had to assist me. The bed lever was a great help. With the base of the lever jammed between mattress and bed base it was very stable. Once I had sorted out a technique I felt more confident with it and did not need Myra’s help for that anymore.
Needs assessment NZ, a good practical service by caring people.

Decision made to be a myeloma survivor

2009-04-18T22:19:00.003+12:00

At the conclusion of my second appointment with my haematologist (June 2001) I made a decision that I wanted to be a myeloma survivor.
My test results from the previous week had arrived proving that I had multiple myeloma. My haematologist explained what multiple myeloma was, my current diagnose, what treatment was available and what treatment options I had. A stem cell transplant in the future was mentioned though not discussed in depth. Examples of myeloma survival were discussed as was the progress of future treatment, hope was on the horizon
There were more urgent matters to consider, initial treatment. That was to be VAD (Vincristine, Adriamycin and Dexamethasone.)
After that appointment I felt more confident that I could fight my cancer. I could now see a way forward.
At home that evening I stood in front of a mirror looking straight into my eyes and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
This I repeated daily for the next two weeks and at regular intervals there after.
By doing that I admitted I had cancer, took ownership and started planning for my survival. My attitude became positive again. I would not tolerate any negativity from myself or others that would compromise my survival.
Even though I was on an emotional roller coaster I knew a way forward, the plan to survive had started.
A daily diary had been started from day one. A record of how I felt physically and emotionally, medication, thoughts, medical information and all my contacts. That proved invaluable allowing me to look back and see my progress and to recall any event.
I have always had the ability to focus on an issue, to plan and execute an end result and good powers of concentration. All of those attributes were going to be called upon for me to survive.
Positive affirmations became important to me. They were repeated like a mantra.

I will be a survivor.
Never give up, never never ever ever give up.
I will stack the odds in my favour.
Multiple myeloma go away, get out of my body.
I can’t change the past but I can influence the future.
Focus, focus, focus.
My illness, my body, my treatment.

The foundation was being built for my way forward.

Glossary.
Haematologist: A doctor who specialises in the diagnose and treatment of diseases of the blood, bone marrow and immune system.

Test results at diagnose

2009-04-17T20:34:00.001+12:00

Test results June 2001.
The simple interpretation was; Confirmed with multiple myeloma, compressed vertebra, 3 fractured ribs, bone lesions in skull, pelvis and legs, mildly anaemic, DVT in calf.

The medical version was; diagnosed with multiple myeloma stage III IgG Kappa;
Skeletal survey (x-rays) showed:
Multiple osteolytic lesions in skull, pelvis and both femurs.
Pathological compression fracture in vertebrae T8 and partial compression fracture in vertebrae T3. Pathological fracture of 3 ribs.

Blood tests showed:
Marked abnormalities in serum proteins.
Mild anaemia.
Marked elevation in erythrocyte sedimentation rate (ESR) suggestive of significant systemic pathology.
Haemoglobin (red cells) 122, low, (normal 130 – 175)
WBC (white cells) 8.8, ok, (normal 4.0 – 11.0)
Neut seg (neutrophils) 6.25, ok, (normal 2.2 – 7.5)
Platelets 320, high, (normal 150 – 400)
Creatinine (kidney) 0.082, ok, (normal 0.06 to 0.12)
Calcium (bones) 2.36, ok, (normal 2.10 – 2.60) Thought this would have been higher.
Bence Jones protein 0.03 g/L, present, (normal 0)
IgG = 80 g/L, extreme, (normal 7 to 16 g/L)
ESR 74, extreme, (normal 1 – 20)
Beta 2 microglobulin 0.9 mg/L, ok.
Raised C reactive protein.

Bone marrow aspirate 12% plasma cells. (5% is normal)
Bone marrow trephine 10% plasma cells.
Swollen right calf that a subsequent ultrasound confirmed as a DVT (deep vein thrombosis).
Weight = 70kg (154 lb) had reduced 3kg (7 lb) over the previous 2 months.

Glossary:
Systemic pathology: a disease throughout the body.
ESR: Erythrocyte sedimentation rate. The ESR increases in diseases where antibodies are increased, such as multiple myeloma.

First hospital appointment

2009-04-16T22:49:00.002+12:00

My first appointment at Auckland hospital (June 2001) was to have tests to confirm that I had myeloma. At 53 years of age I had led a healthy life style until myeloma appeared, the hospital system was a new experience for me. Suffering bone pain at the time with its associated limited mobility I turned up feeling rather apprehensive.
Lots of questions were asked of me followed by a physical examination, blood tests, x-rays and bone marrow biopsy. At the end of day there were no answers though an acknowledgement that there was an 80% chance of my illness being myeloma. Answers would be revealed the following week.
A positive was meeting and dealing for the first time with a medical team at haematology that set a high standard from day one. Being new to the system I had a large number of questions that were answered diligently, I was impressed.
Leaving hospital my apprehension had disappeared. I felt in good hands while needing to discover how I could respond to be a pro-active patient. Being a passive patient was not good enough for me.

There's a rat eating my hand

2009-04-14T20:35:00.002+12:00

A work colleague at the time of my DVT was Richard whose wife is a doctor. Richard is a good husband who listens to his wife so has gained an above average knowledge of medical matters.
Richard said to me “Sid, you are taking warfrin. Do you realise that warfrin is a rat poison?”
“No” I said. “That’s great, I am being stuffed full of chemo and now they give me rat poison”.
That night while sleeping Myra heard me making strange noises, trying to talk and becoming distressed. At that time I was on morphine for pain relief and suffered a morphine side effect of a dry mouth. Because of bone damage I could only sleep on my back which gave me a tendency to sleep with my mouth open that also gave me a dry mouth. I woke with a very dry mouth, so dry I could not talk, just gasp and grunt like an animal. Myra got out of bed to find my water bottle, gave me water to moisten my mouth and tried to calm me down.
Distressed I said to her "There’s a rat eating my hand, there’s a rat eating my hand”.
Myra looked at my hand and assured me that there was no rat and my hand was still intact and uneaten.
Continuing I said “It must be somewhere, look under the bed”.
Myra looked under the bed. “No rat there” she said.
I have a vivid imagination and often have dreams, usually a good dream rarely a bad dream. My arm was out of the bed on a strange angle causing my hand to suffer pins and needles. This put my subconscious into overdrive. Warfrin, rat poison, pain in hand, I dreamt that there was a rat eating my hand. It was scary at the time, now a good laugh.
Who said there’s no fun having cancer?

Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.

Myeloma DVT

2009-04-12T11:46:00.002+12:00

Five days after diagnose for myeloma (June 2001) I developed a pain in my right calf. Being optimistic I assumed it was a muscle strain, “No worries, it will be better next week” I said.
It was getting worse. When I limped into the day stay clinic limping and supported by a crutch the registrar took one look at me and said “That maybe a DVT”. He explained that it was quite common for myeloma patients to have a DVT.
With myeloma the myeloma proteins bind to normal blood clotting factors increasing the chance of blood clotting.
The Register examined my leg, asked about the symptoms. Common symptoms of DVT are pain, swelling, redness and warmth all of which I had in my leg. He then sent me off for an ultra sound scan resulting in confirmation of a DVT.
The treatment was 7 days of heparin injections followed by warfrin tablets to thin the blood and close monitoring. It soon cleared.
No more DVT’s have occurred since though I have had a central retina vein thrombosis in my right eye (Oct 2001) and left eye (April 2005). Both were considered myeloma related and both cleared after 3 months. More about them in later postings.

Glossary;
DVT (deep vein thrombosis): Term used to describe blood clots that form generally in the deep veins of the legs.
Heparin: An anticoagulant that slows down the clotting mechanism and allows your body to break down the clot.
Warfarin: An anti coagulant drug used to prevent the blood from clotting and to treat blood clots.
Anticoagulant: A substance that prevents the clotting of blood.

What is multiple myeloma

2009-04-07T21:09:00.006+12:00

This could get complicated so I revert back to one of my life’s philosophies KISS “keep it simple Sid”.
This is a simple explanation from myeloma UK:

Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system.
Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein which has no useful function. It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.
Bone marrow is the 'spongy' material found in the centre of larger bones in the body. As well as being home to plasma cells, the bone marrow is the centre of blood cell production (red blood cells, white blood cells and platelets).
In myeloma, the DNA of a plasma cell is damaged causing it to become malignant or cancerous. These abnormal plasma cells are known as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells normally divide and expand within the bone marrow.
Myeloma affects multiple (hence multiple myeloma) places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm / leg regions. This is very important since the function of these critical areas is usually fully retained.
Most of the medical problems related to myeloma are caused by the build up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine. Common problems are bone pain, bone fractures, tiredness (due to anaemia), frequent or recurrent infections (such as bacterial pneumonia, urinary tract infections and shingles), kidney damage and hypercalcaemia.
There have been many new developments in the treatment and management of myeloma over the last few years that have had a significant impact on the way myeloma is treated. Research is on-going to develop new treatments and to use existing treatments in a better, more effective way.
Treatments for myeloma can be very effective at halting its progress, controlling the symptoms, and improving quality of life, but they are not able to cure it. Even after successful treatment, regular monitoring is needed in case the myeloma comes back.

More in depth information can be found:
Here (myeloma UK)
Or here (multiple myeloma research foundation USA)

Glossary:
Antibodies: Naturally produced proteins in the blood that destroy or neutralise specific toxins or infections such as viruses.
Hypercalcemia: Abnormally high levels of calcium in the blood.