T+188: Lumbar puncture

Today I went to the hospital for my lumbar puncture. The procedure is done by a doctor in the Haematology daycare unit, but by chance the BMT clinic was also running today (the delayed Monday clinic) so I popped up to say hello before signing in. I have changed my next appointment to be the 12th of January just before I (hopefully) travel to Israel.

I had the last LP under sedation, but this time I decided to just have a local anaesthetic because I wanted to drive home myself afterwards. Like most procedures, the level of discomfort depends upon the skill of the doctor ... and of course Lady Luck!

The pharmacy released the methotrexate without a problem, so I did not have to wait long. However, the procedure was not very nice. The needle went in very close to a nerve, and I got electric shocks down my right leg and my right foot. It was particularly unpleasant when she injected the methotrexate. But still, it doesn't last so long, and it's only once a quarter and there's only two more to go!

The nurses were not going to take blood, but I asked for a blood count to see if my neutrophils had gone down since last week (which would point the finger at the Glivec dose). I am pleased to say my white count was never higher; my neutrophils are 3.87 and my lymphocytes 0.49, the highest they have been for a while.

We had a lovely "traditional" Christmas - just the two of us, some great food, fantastic wine and the Queens's speech. We have also taken advantage of the unseasonably mild weather and played a lot of golf. Although I am playing really badly, Rose is well on form, and yesterday she shot gross 78, which is her lowest score ever. This augers well for 2012.

I hope you had a nice Christmas break, and I wish you all a fantastic New Year.

T+183: Joyeux Noël

J'ai promis mon ami Thierry de faire une annonce en Français, donc ...

Je suis allé au centre médical hier, et bien que mon décompte de neutrophiles à tombé un peut, ces toujours normal, donc c'est pas possible à dire si c'est à cause de l'augmentation de dosage Glivec, ou c'est une fluctuation normale que tout le monde connaître (sans être conscient, comme moi). Le 28 j'y vais pour la ponction lombaire et ils prendront du sang encore pour vérifier; si les neutrophiles sont encore inférieures ils changeront le dosage de Glivec.

Apart de ça, je vais assez bien, beaucoup mieux que Noël dernier! Alors, je souhaite un super Noël à tous, et j'espère que père Noël vous apporte ce que vous désirez!

And I'd like to thank all of you for your kind words and wishes throughout the year; you'll never know how much they mean to me.

T+175: Neutrophil count continues to rise

Today they took blood for my next mixed chimerism test. As you will no doubt recall, this is the test to measure ow much of my host blood remains, versus how much is the donor blood from my brother. The hope is that there will be less of "me" than last time, but it is expected that some will remain, and I will probably need to be treated with mature lymphocytes fresh from my brother! This is intended to bring on some more GVHD, and hope fully kill off the last of my potentially cancerous bone marrow. I do not know if the test results will be back next week, if not I will know after Christmas.

They also took blood for a FISH test. This is another way of measuring how much Philadelphia chromosome I have (another way from the BCR-ABL test they did before). The test is less sensitive than the BCR-ABL, so we are looking for a definite negative from it.

I am pleased to say that my blood counts have continued their meteoric rise; neutrophils 3.36, haemoglobin 12.1 and lymphocytes 0.39. It is about the right time after ceasing immune suppression for my lymphocytes to start to rise (they have never passed 0.4 since the transplant). The cause of the drop in neutrophils is still unknown, so I am going to restart the Imatinib (Glivec) at 400mg per day. If my neutrophils drop, then we will know that Glivec is the cause. If they do not, I think we can assume it was some transient infection that caused the diarrhoea, and my neutrophils to drop. I have been on 200mg of Glivec per day, but the doctor said it really needs to be at least 300mg, so if my neutrophils do drop, I will cut back to 300mg, and see if I can tolerate that. If not, they will give me another drug, which I assume is yet more expensive than Glivec, otherwise they would prescribe it now!

I have my lumbar puncture (LP) and intrathecal methotrexate booked for the 28th of December. They will take blood for a coagulation test next Thursday (22nd), and hopefully the pharmacy will release the methotrexate without me having to wait 5 hours for another test on the 28th (like last to time). It is amazing to me that the doctors and the pharmacy cannot agree what is a reasonable period of time between the coagulation test and the LP, but it seems they cannot, so it will be pot luck on the 28th (the doctor said as much today, even though he will discuss with the pharmacy, they never give anything in writing).

I am trying to make travel plans for work; January to Israel and February to the US. Assuming I stay as I am, this will be no problem, but the rather annoying thing is that we never know what might happen. If my neutrophils suddenly drop like they did, or if I get an attack of GVHD, then I think I will have to cancel the travel. I feel that I must assume everything will be OK, and live as normally as possible (of course I do, I am an optimist in this, the "best of all possible worlds"), and I am looking forward to meeting my colleagues again after more than a year!

BCR-ABL Result

Yesterday the doctor phoned with the results of  my BRC-ABL test, which you will by now have read all about at Wikipedia :). The results are not 100% negative, but show such a small trace it is likely to be a false-positive. There is another test they can do to confirm this which will be done on the 15th when I next attend the clinic, but for now the doctor said that we can safely assume there is no reappearance of leukaemia.

T+165: Good news at the clinic

Today my neutrophils are 1.04, which is a rise of nearly 100%, and is much safer and better for me. The doctor said it looks less and less likely that the drop was caused by a relapse of leukaemia, but the BCR-ABL results are not back yet to fully confirm this. They will be ready when I next go to the hospital, which will be on the 15th. She said that it is also impossible that the GCSF shots could cause such a large rise in the counts, and the rise must be due to my own bone marrow recovering. My haemoglobin has reached 12.0 (and my platelets are still near 180), so overall my counts are pretty good. Perhaps it was an infection that caused the diarrhoea and the fall in neutrophils?

At the weekend we went to Hastings for Rose's birthday, and visited the site of the famous battle (very interesting) before having a nice dinner and spending a pleasant night in a boutique Bed-and-Breakfast. On Sunday morning we climbed the steps up the East cliff in Hastings, which I found quite hard work but very rewarding (it was more than 100 steps).

T+161: Blood count stable

I went to the hospital this morning to get my blood counts checked. My neutrophils are 0.56, so the same as last time more or less (slightly more in fact). Platelets and haemoglobin are still fine. They gave me another shot of GCSF, and I must go back on Monday. Going twice a week is a bit inconvenient to say the least, but I am also keen to know how my counts are doing, so I guess it is worth the hassle. Although I am borderline neutropenic, they said I can still eat normally (i.e. I can eat fresh fruit and vegetables), although I will avoid oysters for the time being!

I have upgraded my work laptop to Windows7, and it is not going so smoothly! It certainly takes my mind off the darker possibilities of my current symptoms.

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!