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


Sandy said...

Sid -- Congratulations on your good progress!! The details you share are so helpful to those of us who are learning the new language of MM, and much appreciated, I am sure, by those who are evaluating their own progress.
Bet you are nearly ready to start driving yourself around now...

Sid said...

Thaks Sandy,people helping people.
Yes, I have been driving the car in my head for several days now.