The 100 Day Assessment

Monday was the 100 day assessment. It has been a major landmark on the horizon for many weeks but turned out to be a deflated balloon by the time we arrived at it. There was no bad news, but how good is ‘good’ is anybody’s guess. When it comes to clear explanations and positive thinking, we ended up with my least favourite doctor. We came away from the meeting having no idea whether 100 % chimerism was any more likely to give a favourable outcome than 50%. Medical science is far from exact and the Reduced Intensity Transplant (RIC) is so new they will probably need 10 year’s worth of statistics before they feel comfortable recommending any particular pathway; and by then they may well have thought up a new way of proceeding.

However, things are moving in a positive direction. The bone marrow biopsy showed more than 98% donor; a tiny percentage of my own lymphocites were still around but it was impossible for the doctors to say whether any were carrying the defect which causes my CLL. Over the next month the Ciclosporin dose is to be gradually reduced. The hope is that this will give the donor immune system a chance to become more active and therefore seek out and destroy my stem cells and lymphocites - which will be seen as ‘foreign bodies’. However there is a possibility that the reverse will occur and my lymphocites will start doing battle with the donor’s. So the weekly monitoring must continue because the doctors have no idea what will happen; they will just react to situations as they arise.

The other positives to take from the assessment meeting are that I can start to lead a slightly more social life. I can expose my self to a few bugs and give my immune system something to work on. It’s got a lot of relearning to do. So small groups are ok but I’ve still to avoid large crowds. Also, my ability to concentrate is beginning to come back; so over the next couple of weeks Christine is to accompany me in the car while I drive short distances. If she feels confident about my capability then I will be able to drive myself. Progress indeed !

Finally, I was told to start pushing my self a bit harder physically ( I don’t think they’ve any idea what the hills are like round here ). Anyway it’s a good excuse to extend the milage on the mountain bike and exercise a new set of muscles, so I’m back to gasping up the hills again. The doctor suggested hoovering, but she did have a wicked grin on her face.