Thursday, 29 March 2007

First Three weeks on Lenalidomide- pretty good

I've now reached the end of the 21 day block of Revlimid and dexamethasone and now enter the rest week Reviewing all that and thought you might like to know my thoughts etc. First though- to answer a question put to me yesterday- am I in any pain? As we all know Myeloma hits us all differently. In my case, though from the outset I've known that I have lesions in my arms, legs, spine, pelvis and skull I have been very fortunate in being occasionally sore but never really in much pain at all. Certainly not as much as other myeloma patients. The only pain I've had has been as a consequence of the lesions and not the lesions as such. So Ive had broken arm pain and surgery pain but even then that's been manageable. The worst pain I had was the effect of a badly infected Hickman line ( my third) and great relief when it was removed. Even now I'm relatively pain free. My display of Myeloma has usually been in the form of strings of infections, shigles three times ( which I confess to finding my last lot pretty sore) and high temperatures- usually resulting in stays in hospital for couple of days etc. Fingers crossed this pain free route will continue.

What has the first three weeks been like on the lenalidomide? Actually better than I thought it would be. Keeping my diabetes under control has been an issue but now that I seem to have that sorted its working out OK but I clearly need to take more insulin at the start of the days when I'm on dexamethasone. When I look at what I've been up to in this first three weeks I'm really quite pleased with it all. So- although on Revlimid and Dexamethasone I've-

lifted a laminate floor and prepared skirtings for sanding folks
replumbed a new immerser circuit for my alternative energy sources
designed and built a home made wind generator
converted my exercise bike into a battery charger as a power source
entertained an American colleague for three days
had three days worth of work style meetings involving fair bit of travelling
been having fun travelling round Edinburgh getting value from my new bus pass- but able to negotiate all buses
still recuperating from the insertion of the pin in my leg and this has slowed me down a bit
been out for meals
also been listening a lot more to music and actually hearing it rather than treating it like musak- a real treat
also keeping the blog going!

As you know I don't want the lenalidomide to be effective only if I have to stay in a darkened room- that wouldn't be much fun and I'm pleased at the way its seems to be letting me carry on doing things. I have various coping strategies which are now a matter of course- I do pace myself more and I also use labour saving devices as much as possible- eg electric screwdrivers/electric saws( not necessarily a good mixture of devices for someone permanently on warfarin!). I warn people at meetings that I might need a break in the middle. Anything to allow me to keep going within the limits of my energy

As for the lenalidomide as such - I don't really know yet what effect it is having on the myeloma or the paraprotein level and that will come after my next bloods. The only sign I am on the lenalidomide ( and this happened when I was on the thalidomide and dex regime )is that I tend to get very florid and bear a passing resemblance to a strawberry lollipop. I have also been very tired on occasion but that may be as much a lack of sleep with the steroids. I've also- again probably as the dexamethasone throws me into higher sugar levels and I mimic diabetes- lost about 4 or 5 kilos-not a hardship for those of you who know me!

So all in all- pretty good so far. My life has always been a mixture of practical, outdoor and work stuff and I still seem to be able to keep that going though limit it all a bit more. Hope it keeps going like this AND that the paraprotein comes down. Now we'll see how the week without drugs go.

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