Falling white cell count

Today I went back to the hospital for an extra clinic appointment after my diarrhoea attack last week. My neutrophils have fallen to 0.52, which is really bad, almost neutropenic. You may recall that the white cells consist of of lymphocytes that attack viruses and neutrophils that attack bacteria. My worst times in hospital were caused by e-coli infection when I was neutropenic, so I am a quite worried.

There are three possible causes of the drop in neutrophils: a) my neutrophils are pretty much all donor produced, but I do have some residual host immune system which is attacking the neutrophils; b) it is a common side effect of imatinib (Glivec) to lower blood counts; c) my leukaemia has returned.

Clearly, option c would be a disaster. The doctor thinks it is unlikely, because my platelets and haemoglobin are fine, and a relapse of leukaemia would normally knock all the counts. They have sent blood for a BCR-ABL test, that will show if there are leukaemia cells in my blood. The test takes a couple of weeks to be done, although they will try to expedite it for me. The doctor would also like a bone marrow biopsy, but since I am not so keen on the procedure we decided to wait for the results of the blood tests, although she said that if the blood tests are negative for a relapse of leukaemia, I might need the bone marrow biopsy anyway because it is a good way of seeing if the low blood counts are caused by my host immune system (and this can be treated if it is the case).

Rather than concentrate on finding the cause in the short term, I (and the doctor) am more concerned about infection. Accordingly, I had
a shot of GCSF today (the stem cell growth hormone) to try and boost my neutrophils, and also I will take a reduced dose of Glivec. I am going back to the hospital on Thursday to get another blood count, and hopefully my neutrophils will have recovered.

This all reminds me of the week before my transplant, when my red count dropped a lot in one day, and the doctor was worried it was caused by a relapse of leukaemia and took a bone marrow biopsy that day. I guess that whenever these symptoms occur (drop in blood counts), this is always a possible cause.

Assuming this is not a relapse of leukaemia, it seems there is a war raging inside me, over which I have very little control. On the one side is the donor immune system, attacking me (GVHD) and hopefully killing my host bone marrow, and on the other side the remnants of host immune system are attacking my donor immune system!

T+154: GVHD strikes?

On Tuesday night I had a bad attack of diarrhoea. I took loperamide (Imodium) and I called the hospital on Wednesday morning; they asked me to come in in the afternoon and get reviewed by a doctor, so off I went.

They took blood, and checked me out. It is probably caused by GVHD, but they also think it might be an infection. We decided to take no further action, and see how things develop. If it stays bad, I must go back on Friday, otherwise I will go back to the hospital on Monday so they can keep a track of my blood counts. So far, I have not had any more diarrhoea, so the loperamide has done the trick, and maybe whatever has caused it has calmed down.

T+147: An interesting clinic

Today the clinic was quite interesting. This last week I have noticed some dry skin on my face and head, the doctor told me that it was almost certainly caused by graft-versus-host disease. This is a good thing, as it means that my donor immune system is also hopefully attacking what is left of my bone marrow, which is the goal of the transplant (to kill all of my original bone marrow). Unfortunately, it also means that my white cell count has dropped, because the chemicals released in the blood as a result of the GVHD suppress the production of blood cells in the bone marrow!

The treatment for the skin problem is to apply steroid cream to the affected areas, which should resolve it, and hopefully enable my blood counts to stabilise. If they have fallen again next time, then I will be put back on the immune suppressant to enable my counts to recover; it is quite a balancing act! The next clinic is scheduled for two weeks time, but if the skin problems spread, or I get other symptoms of GVHD (like diarrhoea), then I will call the hospital and get seen sooner.

The doctor I saw today was another consultant on the BMT team that I had not met before, and he was very knowledgable, so I asked him about my life expectancy/chance of relapse. Although he was non-committal (like his colleagues), he explained the probability curves for the various risks, and concluded that probably, if I have not relapsed in 18 months then I should be OK, although a small risk will always be there. This is why I don't like to use the expression "I beat leukaemia"; it is never really beaten.

I had a "reduced intensity" transplant,meaning I was not blitzed with radiotherapy beforehand (because of my age and the risk of it killing me). Until recently, it was thought that leukaemia was too aggressive to be treated this way, especially my type of leukaemia (Philadelphia positive acute lymphoblastic leukaemia), although they have been doing reduced intensity transplant for lymphoma patients since 1997. Ph+ ALL is quite rare, and there is very little data about reduced intensity treatment for it (almost none in fact). The hospital only do 3 bone marrow transplants for ALL patients a year, and not all are reduced intensity! He thinks that in about 3 years time there might be enough data to form some more concrete ideas about outcomes.

My health continues to be good, and being back at work is very rewarding. I still have the phlegm (it may take months to go away says the doctor), and now this dry skin, but neither of these problems is affecting my life significantly. Although my white cell count and platelets are down, my haemoglobin continues to rise; today it was 11.8. This is because the lifecycle of red cells is much longer, and sadly this will drop back also over the coming weeks.

T+134: Bridge!

This Tuesday after work I went to play bridge in London with my good friend Andrew. It is the first time this year I have played, apart from playing with the most excellent Bridge Baron game on my iPad. I very much enjoyed the session; it is so much nicer playing with people than a computer!

This weeks clinic passed without any problems. My haemoglobin level has risen to the giddy heights of 10.9; the second rise in a row and I feel an upward trend here. Now that I have stopped taking the immune suppressants, I am also following my lymphocyte count, and this was only 2.6 (lower than last time). I have another appointment in two weeks, and then they will probably lapse to once a month (assuming my blood counts continue to be stable).

The leukaemia and lymphoma department at the hospital produce a small newsletter periodically, and the latest issue has a very sad story of a young man who had ALL and died before getting to transplant. It was quite upsetting to read, but it has had the effect of making me feel lucky to be alive! I have met no other patient in my clinic who had ALL (they mostly had lymphomas of one type or another), so any stories or information about other sufferers of ALL is always interesting.