T+232: Neutrophils recover

Today I visited the hospital as planned, and the blood-test results were actually very positive (I responded well to the GCSF). My neutrophils have bounced back to an impressive 4.0! In addition, my haemoglobin is up to 12.6 and platelets over 200. My lymphocytes are also above 1.0, but since I received a dose of them on Monday I am not sure it means very much. I did wonder if the result on Monday was due to a machine error, but they double check all the tests in the lab, and the result was accurate - something caused my neutrophils to crash, maybe a viral infection that has now passed? We will never know.

However, the doctor repeated to me that during my recovery my counts will fall from time to time, and the cause is not easy to determine; although I am in good health now, I think that it would be unwise for me to travel until I have a second positive blood-test result to show that things have settled down again.

Since I have no travel planned for the remainder of February, I will return during the first week of March for my next clinic appointment.

T+228: Mature lymphocytes

Today I went to the hospital to get my first dose of mature lymphocytes from my brother Harry. But I also got some disturbing news about my blood counts ...

It snowed a couple of days ago, but the roads to London were all cleared nicely, and I arrived just after 09:30. Harry was already hooked up to the apheresis machine, but the vein they were taking the blood from kept spasming and stopping its blood supply. Eventually things settled down after they put a warm blanket round his arm, and the cells were collected. They did not take much - only about 100ml - but each dose is also quite small. After Harry was unhooked we went for lunch (fish and chips, very good as usual), and then came back for a quick check of Harry's blood which was all OK. The harvested cells went off to the lab, I went to the pharmacy and Harry went home. Let me thank Harry very much for his ongoing donations - I would not be here without them.

The cells came back from the lab OK, so they put in a cannula and took blood (it is a month since my last blood count). My haemoglobin is fine at 11.6, platelets OK at 178 and lymphocytes continuing to increase at 0.89; but my neutrophils have dropped to 0.72 (less than 0.5 is neutropenia). It was a bit like a slap in the face! It happened back in November, and they recovered OK, but it is still worrying. They gave me a shot of GCSF (stem cell growth hormone) and I am going back to the hospital on Friday to have another blood count. Fingers crossed eh!

The dose of lymphocytes they gave me was 4ml - so not very much! It was given with 500ml of saline, so it took over 30 minutes, but was uneventful. They start to work in 4 weeks ...

Last week we went to our house in France for the first time in 18 months. Although it was cold, we have a wood fire that really heats the house well, and it was very pleasant being there and making plans for the year. I am looking forward to going back in the near future.

T+203: Treatment to enter a new phase

My treatment is to enter a new phase that I will explain below.

Firstly, my blood counts are good. Haemoglobin 12.2 (a bit low compared to how I used to be, but very good), platelets 189 (normal), neutrophils 2.95 (normal) and lymphocytes an impressive 0.66 (normal is 1.5). This is the second or third successive rise in my lymphocytes, and shows a clear upward trend. The lymphocytes themselves are composed of B cells and T cells, and the T cells further divided into CD4 and CD8. The CD4 level is a critical indicator, and they will start monitoring it now that the overall lymphocyte level is rising; 0.2 is the level at which my drug regime will change. I am fit to travel:)

I got the results of the various tests that I have had recently:

• The FISH test was negative. This is a test for a relapse of cancer, and is less sensitive than the BCR-ABL test (which showed a very weak positive). This is good news, as it confirms that I probably have not relapsed. However, the BCR-ABL test does mean there are still some problem cells ...
• The lumber puncture they did in the new year showed no cancerous cell in my spinal fluid. Just two more of these to endure during this year!
• My second chimerism results show that I still have some residual host T cells and B cells, in fact very similar to the first test (taken in October). This is not unexpected, and it means that my donor lymphocytes have got used to them, and are unlikely to kill them, and this what we want so that I have 100% donor lymphocytes (my neutrophils are already 100% donor, but since my leukaemia is lymphocytic, it doesn't help). The next step is to harvest some mature lymphocytes from my brother, and inject them into me. These new donor lymphocytes are not used to me, and so will attack - hopefully killing my residual lymphocytes, but also causing GVHD. They treat me with these lymphocytes in increasing doses every 12 weeks, starting with a small dose and tripling it each time. The hope is that they will kill off my residual lymphocytes before causing me too much grief with GVHD.

This is how my treatment will evolve:

They are going to contact Harry (my donor brother) shortly, to arrange a screening medical. The lymphocytes are harvested in a similar manner to the original donation (via apheresis), but this time there is no need for any boosting injections, and the apheresis is shorter (about 2 hours). They take enough cells to dose me 4 times (a year's worth); the future doses are frozen. We will try and arrange the apheresis, and my first treatment for the week of the 6th of February, the week before I travel to the US. The timing is quite important, as I am likely to get GVHD from 4 to 8 weeks after the treatment, and they advise me not to travel in that period.

This time I will be able to visit Harry during his apheresis, Which I wanted to do for the original,transplant, but I became neutropenic and could not leave my hospital room.

I asked about travelling, precautions and so on. The doctor told me this (and I do trust his judgement):

• There is no point in wearing a mask on the plane. The masks offer some protection against bacteria, but nothing against viruses. You can get special anti-viral masks, but they are very uncomfortable and not warranted for me given my (good) blood counts.
• Whilst good hand hygiene is always a good idea, it mostly prevents the spread of bacteria. Since my neutrophils are normal, he thinks I don't need to take special care when travelling.
• I am no more likely to catch a cold on the plane than anyone else, but if I do it will just take longer for me to recover, and there is no special action I need to take; normal cold remedies are fine to use.

As to my well being, I am quite well. My ongoing phlegm problem seems to be almost resolved, which is probably due to the rise in my lymphocytes.

All in all, a very positive visit to the hospital!

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.