I don't want to appear overly glum, but I would say that on the whole appointments with my consultant have generally provided little to cheer about. But on Friday I had a consultation and I can honestly say I left a very happy man.
First up would have to be the success of my recent stem cell transplant. I had bloods taken on Tuesday while I was in hospital for serum free light chains (SFLC) and on Friday found out they are at a level of 57. Back on the 23rd March they were 54, which means they have stayed pretty stable over the three weeks. Now I have never seen my levels below 500, so to see them at 57 is brilliant. A normal level would be below 20, so I cannot say the stem cell transplant has got me into remission, but it has got me bloody close and I can now say I have SFLC levels 2.5 above normal instead of 25 times the norm, or (as it was in May last year) 194 times the norm! So I know right now this disease isn't running rampant inside me eating away at my bones, it is at a very low level. I made a pact with myself to have a beer to toast this fact when I got home. I have avoided alcohol for the most part over the past few months as I feel my body has had enough to cope with without filling it with booze too, but for once I know that it hasn't got that much to do so deal with it liver.
Another pleasing fact was the quality of my donor match. I have referred to him being a 4/5 in recent posts, but I read another myeloma blogger talking about her 10/10 match, so I asked what kind of match is mine out of 10? 9/10 came the reply, they would never have found me a 10/10 match. But the risks associated with a transplant done with a 9/10 match are not significantly greater than those assoicated with a 10/10 match, it is only when you get to an 8/10 match that the risks suddenly soar. So it just confirmed that this wonderful Portuguese man is a very good match, which made me happy. Apparently when I have the transpant they have to coordinate things so that the donor donates the stem cells 24 hours before I am due to have them, and they will be flown over from Portugal special delivery signed for and everything, to get them to me fresh and on time. Amazing really.
The last bit of good news is something that I guess we should have known but it is nice to hear the man in charge say it and that is: I understand time is not on our side. We were getting so worried that there is a wait of 3 months before they consider the next transplant, then there are all the coordination issues, and my disease has shown itself to be resilient and fast moving. All we could see is potential delays and hold ups while my disease shoots off again reducing the potential efficacy of the donor transplant as days go by. But my consultant has confirmed that he is doing all he can to get this done as soon as possible. I may even become part of a clinical trial whereby I will be given less chemo (a mini-allo) as conditioning but will be given a low level of the drug Revlimid for a year following the transplant. This has been found to increase the graft-versus-myeloma affect (where the donor immune system recognises the myeloma as bad and kills it, yes!) and reduce the need for donor lymphocyte top-ups which are sometimes required following transplants to get the immune system going again.
I didn't like the idea of having a 'mini-allo' as I want the most conditioning possible to ensure this horrible disease is eradicated, but I was politely informed that we have already increased the risk of mortality by having a stem cell transplant so close to a donor transplant, and in terms of toxicity it may not be a good idea to give me another round of high dose chemo and radiotherapy. Fair enough.
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