Well 5 weeks in I'm feeling very well considering. I got a rather lovely note from my Aunt a couple of days ago and in writing to her I've kind of written a blog entry.
I'm still cycling in to work every day, I have stopped running though as I have found my current drug regime is making me quite tired. A couple of weeks ago I found out that I am Philadelphia Chromosome positive (PC+). Being PC+ means I am able to take Imatinib, which you may remember is the drug that aims to switch off the signal to overproduce white blood cells. Rather frustratingly I won't be able to start the new regime until 29th May for a variety of reasons. First I had to have some virology tests, second I had to freeze sperm, as the drug is suspected to make sperm toxic and in the event that we wish to have another baby it's likely we will have have to go the IVF route.
Having completed those two things I was supposed to start my new regime on Tuesday, however on seeing my consultant she informed me that she's keen to perform a stem cell harvest. It was a decision that was both disappointing and heartening in equal measure. Disappointing in that I was keen to get on with things and heartening in that the decision suggested that my consultant is right at the forefront of fighting the disease. In brief a stem cell harvest is performed at this stage in order to freeze store my white blood cells at the stage of the disease I am at currently. This is performed in case the disease progresses, at which point they will be able to replace the deteriorating white blood cells with the stored cells at this stage. The main debate is around whether to take cells now, or once I am on the new drug and it has proved successful in reversing the disease to molecular remission i.e. the cells are in much better shape than now. At present there is no clear agreement in the profession, so my consultant has decided to take one set now and one in 18 months time, at which point (hopefully) I'll be in much better shape. The issue is clouded by financial constraints, in that there has to be a justification on the trust's part to store two sets of stem cells on my behalf, however at this stage there is no real pressure on this area of treatment. However, in future I may be asked to make a decision as to whether I pay to store one set.
Anyway, the reason I couldn't switch regimes on Tuesday was that I have to be completely drug free for two weeks. It means I have to come off the regime I am on currently as well, which in it's own right is frustrating as it had succeeded in lowering my white blood cell count from 143 to 92 in 4 weeks (target 4 to 8) and by coming off the drug it will more than likely jump back up to the initial level.
Despite all this, I am remaining generally positive. I am having my low moments which I guess is perfectly normal, but the boys keep us extremely busy and the fantastic side effect of this situation is that it's prompted us to get off our arse and do, rather than talk about doing any number of activities. We've also got the move pending which means we've got plenty on generally. Nicky's a bit more up and down and quite angry about things in general, but I guess once again that's normal. We will take this as an opportunity to make the most of what we've got and make sure we squeeze every last ounce out of life.