So I had my appointment with the transplant consultant yesterday, and for the first time I left feeling ok. There was some positive chat and a new bit of information which was a bit rubbish, but on the whole ok. Normally I go into these appointments thinking that there are unlikely to be any nasty surprises - I even went into one having had a chat with the senior nurse the day before who told what was going to be covered - but on every occasion so far there has always been something that has knocked me sideways.
The main part of the meeting was me asking about the letter he sent which I talked about in the previous post. My main concerns were the survival time of 5-7 years for younger patients and his concern about the presence of a '+1q 21'. I had read that the life expectancy of people with Myeloma is in the region of 6-8 years in a booklet, but I thought that was because most people with Myeloma are over 60. Now I am reading that this does apply to me and that I will be lucky to reach 40. To this I was mildly reassured that although the life expectancy of 5-7 years is a cold hard fact, this is with 'conventional' treatment and his aim is to step outside of conventional treatment as this length of survival is 'not good enough' in my case. So it is nice to know that the aim is to do better than 7 years, but the flip side of this is the way of getting there is through an allogeneic stem cell transplant (donor transplant), and as currently a worldwide search has come up with no donor matches for me, this means a cord blood stem cell transplant, which is quite a way from 'conventional' almost into experimental and is by no means a walk in the park. I don't think I'll talk about what I know about this right now!
So I then asked, what is a +1q 21? This is apparently a chromosome which is present in my Myeloma cells which is associated with more aggressive behaviour; and by more aggressive this means the Myeloma tends to be more resilient. This, he said, was evident in the way the disease has seemed to respond well to treatment at first but then quite rapidly stop responding. My response to cyclophosphamide was excellent for a few cycles, then things just stopped and then my SFLC started rising again, and Velcade the exact same pattern occurred just over a shorter time span. The upshot of this is that it does not bode well for my response to high dose chemo and the length of remission after the stem cell transplant which, if my consultant was predicting based on the information he has, is unlikely to be long. Quite a big thing to go through for something that probably isn't going to do the job, but we have to try the conventional stuff before the unconventional becomes an option.
So a bit of an up and a bit of a down, so like I said all in all, ok. And better than usual.
Finally we discussed dates and there is a general feeling of urgency to get me to transplant. I think due to the fact that my SFLC levels were shown to be rising on the last blood test there is no reason to think that the disease is not just coming back at quite a rate and therefore the sooner they hit it the better. I go for nuclear medicine tests (for heart and kidney function) on the 27th February, I have a line fitted on the 28th February (which is where I have a 'soft, hollow, flexible tube' inserted into a large vein in my chest just below the collar bone for easy administration of drugs) plus a lung function test and some xrays of my chest, and then shortly after that (estimated 3 days) I will go in for transplant.
So this is it, less than 2 weeks away, I'm going to enjoy my first alchoholic drink in ages as I'm thinking what harm can it do now?
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