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.