Things are running a bit slowly at the clinic today, and I had to wait a long time to see the doctor. My blood results were good: haemoglobin 13, platelets 199, neutrophils 3.3 and lymphocytes 0.9. They took blood for the next chimerism test today; if there are still any of my host T-cells left they will treat me with more mature lymphocytes.
I am currently waiting for what I hope to be my last nebulizer. They took blood for a "lymphocyte subset" test that gives a breakdown of what type of lymphocytes I have (there is a good article on Wikipedia about lymphocytes if you are interested). If the number of helper T-cells is high enough then I will not need any more nebulizers!
I learned today that the recovery rates of the different white cell components after a transplant are radically different. Neutrophils recover quickly, T-cells more slowly and B-cells very slowly. To compensate for my low white count, I take antibiotic and antiviral medication twice daily, and I will continue doing so for 5 years! This is how long it takes for the B-cells to recover completely. I will be very glad to still be here taking them four years from now!
Thursday 31 May 2012
Tuesday 22 May 2012
T+334: Chimerism Results
I rang the hospital to find out the results of the chimerism test, and I am pleased to say that the results were quite good. The fresh dose of mature lymphocytes from my brother seem to be working well, and there is only a small amount of my original host lymphocytes remaining; all of the B-cells are now donor, only a few T-cells of my own remain. They think that the mature lymphocytes are probably still doing good work, even 3 months after the infusion, and they do no plan another infusion just yet (remember, they took enough for four doses back in February). Considering I have only had very mild GVH (just some skin rash), I am very pleasantly surprised that the graft-versus-leukaemia effect has happened. They plan to do another chimerism test in June, which (given that there is some considerable cost associated with the test) I take to mean that they expect my remaining host cells to have been mopped up by then!
As I said last time, even when I have no remaining blood cells of my own there is still a chance of relapse, but this is the best outcome one can expect from the transplant.
As I said last time, even when I have no remaining blood cells of my own there is still a chance of relapse, but this is the best outcome one can expect from the transplant.
Thursday 3 May 2012
T+315: Chimerism questions
I am back in the clinic for my regular checkup, drinking a coffee whilst waiting for my nebulizer. I am well, and enjoying the cut and thrust of work (and ironically working harder than I did before I got leukaemia). I suppose it is quite natural, but I am more aware of the amount of cancer that is rife among us, particularly leukaemia. I read in the hospital charity newsletter that a 46 year old woman was admitted with leukaemia a month before me, and died whilst undergoing treatment. She would have been on the ward at the same time as me! It makes me realise how lucky I am.
My bloods are very stable; haemoglobin 12.4, platelets 178, neutrophils 2.51 and lymphocytes 0.89. Next time they will do a lymphocyte subset test, and if all is well I will change from havinng the pentamadine nebulizer to tablets, which will mean only a half day at the hospital (all being well).
They took blood for the chimerism test today, and I asked the doctor what the results really mean. Remember that the chimerism test is to see how many of my original host lymphocytes remain; the idea is that all of them will come from the donor (my brother). The best possible outcome is that all of my lymphocytes are donor lymphocytes. However, there is no real cure, and they do not really know how it affects the chances of relapse. As I have written before, my type of leukaemia (ALL) is quite rare in adults, and there is not much data to go on. The best indicator of long term survival is ... long term survival! In other words, the longer I am here, the more likely it is that I will be here longer! If I do relapse, they will not treat me again; if my disease is so aggressive that it can withstand a transplant, it is pointless repeating the process.
If I still have some residual host lymphocytes, they will give me another infusion of my brother's mature white cells; they are confident that at some stage I will have no more host lymphocytes. I will get the results in a couple of weeks.
On Sunday it was the stone setting for my Dad. Since I missed the funeral last year it was a good opportunity to say a formal goodbye to him. Even though I have no religion, I am sure he would have wanted all of his sons to say Kaddish (mourner's prayer) at his graveside, and it felt good to finally do so. It was also nice opportunity for a family get-together.
My bloods are very stable; haemoglobin 12.4, platelets 178, neutrophils 2.51 and lymphocytes 0.89. Next time they will do a lymphocyte subset test, and if all is well I will change from havinng the pentamadine nebulizer to tablets, which will mean only a half day at the hospital (all being well).
They took blood for the chimerism test today, and I asked the doctor what the results really mean. Remember that the chimerism test is to see how many of my original host lymphocytes remain; the idea is that all of them will come from the donor (my brother). The best possible outcome is that all of my lymphocytes are donor lymphocytes. However, there is no real cure, and they do not really know how it affects the chances of relapse. As I have written before, my type of leukaemia (ALL) is quite rare in adults, and there is not much data to go on. The best indicator of long term survival is ... long term survival! In other words, the longer I am here, the more likely it is that I will be here longer! If I do relapse, they will not treat me again; if my disease is so aggressive that it can withstand a transplant, it is pointless repeating the process.
If I still have some residual host lymphocytes, they will give me another infusion of my brother's mature white cells; they are confident that at some stage I will have no more host lymphocytes. I will get the results in a couple of weeks.
On Sunday it was the stone setting for my Dad. Since I missed the funeral last year it was a good opportunity to say a formal goodbye to him. Even though I have no religion, I am sure he would have wanted all of his sons to say Kaddish (mourner's prayer) at his graveside, and it felt good to finally do so. It was also nice opportunity for a family get-together.
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