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