Friday, September 17, 2010

Rev-lite trial: end of cycle 5.

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.

Monday, September 6, 2010

Back in Blogsville and an earthquake.

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.

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.

Wednesday, August 18, 2010

Rev-lite trial: end of cycle 4.

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

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.

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.

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.

Friday, July 30, 2010

Rev-lite trial: end of cycle 3.

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.
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.
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.

Thursday, July 22, 2010

Who let the dexo dogs out?

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

Thursday, July 1, 2010

Lytic lesion right femur update 3

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

Tuesday, June 22, 2010

Rev-lite trial: end of cycle 2.

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.
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.
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.
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

Saturday, June 12, 2010

Rev-lite trial: cycle 2, day 18.

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.

Friday, June 4, 2010

The Pine cone man

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.

Tuesday, June 1, 2010

It's been two tough months

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.

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

Thursday, May 27, 2010

Rev-lite trial: end of cycle 1.

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.
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.
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.
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

Sunday, May 23, 2010

Lytic lesion right femur update 2

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!

Sunday, May 16, 2010

Loss of independence

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.

Monday, May 10, 2010

I’m on the Rev-Lite clinical trial

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.

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.

Monday, April 26, 2010

Why did this happen to me?

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.

Thursday, April 8, 2010

Lytic lesion right femur update

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.

Saturday, April 3, 2010

Lytic lesion right femur

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.

Tuesday, March 23, 2010

Myeloma relapse 1

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.

Saturday, March 20, 2010

I found my ears

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.

Wednesday, March 17, 2010

Bone marrow biopsy

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.

Sunday, March 7, 2010

Soft tissue plasmacytoma update 1

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.

Soft tissue plasmacytoma

Wednesday, March 3, 2010

Survivorship – 1: Proactive stance

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.

Sunday, February 28, 2010

Survivorship – The first 4 months

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.

Wednesday, February 17, 2010

Do it sooner rather than later

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.

Sunday, February 14, 2010

Myeloma plateau or remission

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.

Monday, February 8, 2010

Interferon maintenance for myeloma

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.

Thursday, February 4, 2010

Myeloma wish list

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 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.

Monday, February 1, 2010

Central vein occlusion again

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.

Monday, January 25, 2010

The corridor

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.

Friday, January 22, 2010

Coping with death of a myeloma friend

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.”

Tuesday, January 19, 2010

Soft tissue plasmacytoma

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.

Saturday, January 16, 2010

My veins

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.

Wednesday, January 13, 2010

Chemo brain

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.

Sunday, January 10, 2010

The golden archway

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.

Thursday, January 7, 2010

Helpful hints for myeloma survival.

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!


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.


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.

Monday, January 4, 2010

Part 3 Plateau stage commencement

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.