My CLL Journey - The Crunch

30 December 2006

My leukaemia condition has recently undergone a serious change and has taken on a much more aggressive form. After two years of not having to have treatment (from October 2004 to October 2006), my quarterly consultant’s check-up on 30th October showed that, whilst the Wbc and Hbn were 8.9 and 10.1 respectively, my white cells were “all over the place”. That was the technical term my consultant, Dr Paul Hill, used!! The problem is that the returning cancer in my bone marrow has caused a condition called “protein p53 defect”. This in turn has attacked two particular chromosomes, bringing about – the official term is - “17p and 11q deletions”. These chromosomes contain the memory for all the white cells. As I understand it, they would not now be able to respond to any further invasion of cancerous cells, because they would not be able to recognise them and I would become increasingly vulnerable to infection. Consequently the medical response has to be as aggressive as the form of the cancer’s return.

I have been referred to a consultant, Dr. Steve Devereux, at Kings College Hospital, South London, by my local consultant. Tina and I saw him on Wednesday, 27 December. It was a rather tough session, albeit very professionally handled and included a very helpful intervention by the bone marrow transplant co-ordinator, Stephen Lang. The plan is to start intra-venous chemotherapy on or about Monday 15th January. This will be a treatment programme of between 8 and 16 weeks, initially at Kings, but possibly moving to Brighton after week 4. It will be a combination of 2 drugs, Methylprednisolone (a steroid) and Campath (an antibody) whose use together is relatively recent, but has been found to be very effective. The Methylprednisolone is given to me for 5 days in weeks one, five, etc. The Campath is given to me 3 days per week each week. There is a probability that I will be able to self-inject the Campath from week 5 at home and go to the Royal Sussex County Hospital, Brighton for the Methylprednisolone. Apparently the self-injecting is similar to a person with diabetes having to self-inject on a routine basis. I expect to travel daily to Kings for those initial weeks, but we will have to see how it goes. I will be participating in a national clinical trial of the simultaneous use of these two drugs – that sounds interesting in itself as it appears there are only about 15 on it. The chemo will be quite aggressive as it has to fully clear out the cancer from my bone marrow. On its own, that treatment would be to give me a remission of about a year.

About 4 to 6 weeks after finishing this 8 weeks (or more) of chemo, I should have a bone marrow transplant from a donor. They are testing my sister, Daphne, and brother, Peter, for a blood tissue type match – there is a 25% chance of success there. If unsuccessful, they will search the Anthony Nolan bone marrow donor bank and others, both here and abroad, with – we are told – a 66% chance of finding a matching donor. The bone marrow transplant process is incredible. The donor gives blood from which the stem cells are extracted and then gets the rest of the blood back, all in one continuous loop – as it were. (Unfortunately it turned out that neither Daphne nor Peter proved to be a match.)

I would receive the stem cells by way of transfusion in Kings as an in-patient. That will probably only take a day, but I will then have to remain there for 4 to 6 weeks, in an infection free environment, while the “engrafting” process takes place inside my bone marrow. This is the tricky bit as they will have to constantly monitor me for reactions, possible side effects and infections. Unfortunately all of this comes with risk attached. There is a possibility of the new stem cells identifying the host body as “foreign”, resulting in disease, which will have to be treated. However it has a risk of 20% fatal consequences. The good news is that there is a 40 - 50% chance of a complete cure – and I guess a 30 - 40% chance of a stalemate situation. The 4 to 6 weeks hospitalisation is then followed by a 6 month recuperation period at home, but subject to regular tests and monitoring as well. During this time and from the start of the earlier chemotherapy to my admission for the transplant procedures, I will be very vulnerable to infections of all sorts and will therefore have to avoid “risky” environments, such as buses, trains, large crowds, restaurants, pubs, etc.

If no donor can be found, there is a further transplant option of using my own bone marrow. Having had the 8 weeks chemo, they extract bone marrow from me, do some more clever stuff and then give it back. The idea is that the chemo should have left me with bone marrow clear of cancer. However, they say they cannot be 100% certain that the returning bone marrow will be totally cancer free and the whole thing just starts off again.

The real crunch came when Steve Devereux told us that, without any treatment, my mean life expectancy would be about 3 years. So, there is no option but to go for the bone marrow transplant and hang on to the 40 - 50% success rate as our goal for the future. One of the effects of the return of my leukaemia has been the lowering of my red cells count, making me anaemic and lacking in energy. I had a transfusion of 2 units of blood in late November and another 3 units on Friday 29 December, making me feel a lot better immediately! This was done at Princess Royal Hospital, Haywards Heath.

One good thing about all this coming around this time is that we have just had a wonderful Christmas with our family. Anna, Nick and Eva were down from Mull until the 29th and, of course, Matthew, Charrise and the girls are right at hand. So we have had the immediate comfort and support of those closest to us. We also have a many close friends, both through our church, our extended family or otherwise, and we have had offers of help with travel, London-based accommodation, and lots of prayers and good wishes. It has been all so very heartening.

Of course this news has had knock-on effects with other parts of my/our life. Apart from the avoidance of risky situations and environments during and after my treatment, I have been told that I should write off most of the year as far as work is concerned, although that might depend on the nature and timing of any opportunities to do some. Consequently I will have to stop work once I start the chemotherapy and I am not sure if and when I might be able to go back. However, there are so many indeterminables attached to all of this, you never can tell. I have really enjoyed these past 7 months working in London with the Met, doing something so interesting and which I feel has been so worthwhile. If I have to stop work now, I can look back on a time, albeit fairly short, but which has been very fulfilling.

Fortunately we managed to have a week’s holiday in La Gomera from 3 January, but we have had to put on hold our July celebration plans for Tina’s 60th and our 40th wedding anniversary. Maybe it could still work out okay, but at this moment it looks a little unlikely - we will have to wait and see.

Tina and I saw Dr Steve Devereux again on 12th January - my Wbc: 78; Hbn: 10.2. – with news that he needed to make a special application to get me on the clinical trial as the official number required had been filled. The start of my treatment would therefore be delayed until later in the month. So we hadn’t needed to bring forward our holiday on La Gomera and spend that extra £600 in order to move it – Doh !!! He also advised that I should put any urology investigations on hold, despite my referral resulting in an appointment in January, as it seems you can have CLL in the bladder and that might have been the reason for the urinary infection. So with a couple of weeks spare and after saying goodbye to everyone at work before our holiday on La Gomera, I went back to Empress State Building and the Safer Neighbourhoods Unit for another two weeks including joining unit advisory visits to Islington and Waltham Forest.