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.

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The repairs to the external shell of planet Rodg took another step forwards on Thursday with the removal of two stitches; they marked the spot where the Hickman line was removed last week. So I no longer have a couple of pipes dangling from my collar bone which makes sleeping more comfortable but spoils my robot image.










Other bits of the external shell are not faring so well. The normally skinny Rodg ankles and boney feet look more like traditional Pork sausages the size of tree trunks. The daily dose of Furosemide is supposed to help reduce fluid retention but is not making a great deal of impact. I am 1/2 a stone heavier than normal and all the weight is concentrated in two places; the other being my equator, which has gained 2 inches. If things carry on like this I really will end up looking like a planet.

On the positive side, the haemoglobin count is now up at 109. Not quite as high as I’d hoped after the blood transfusion but I do feel more energetic so perhaps this rotund waistline will start to shrink with increased exercise. The general medical opinion is that the Ciclosporin, anti-rejection, immuno-suppressant drug, can be responsible for fluid retention but that will not be stopping for a good while yet. When will all this medication end ? Half the pills fit in my blue, Mon.-Sun. box but there are so many that the other half have to be counted out twice a day. I hate swallowing pills !

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So why is this 100 day hurdle so special ? Red blood cells have a life span of 100 - 120 days and are created from stem cells in the bone marrow. So round about now, the last of my own blood group should be vanishing and being replaced by the donor’s ( depending on how much of the old ‘me’ survived the chemo ). The balance between the two is going to be a fairly good guide as to what is going on deep in the marrow and how successful the transplant has been. I expect that all will be revealed over the next couple of weeks. The long term aim is for the donor cells to take over completely.



Hey ! This week’s extra couple of pints of blood has made an immediate difference. I can walk up the hill without my heart feeling like it’s about to burst and my legs feeling like lead weights are attached. Could not resist trying out my bike muscles for the first time. Took a whizz down to the far beach at sunset to see the tide coming in. Today really felt like the first day of Spring. There was a real warmth to the sun and not a breath of wind. The air was full of bird song. Inigo and Extrapuss thought it was heavenly.