My father and I went back to Hammersmith to see a new doctor - Francesco Dazzi. Francesco is the consultant who pioneered the used of donor lymphocyte infusions (DLI) in BMT patients.

DLI is where the patient is given more Lymphocytes from the donor. This is not the same as a bone marrow transplant. The cells are taken from the donor after being filtered from the donor's blood, and then transfused into the patient by an injection.

The DLI has became important in the post BMT treatment of CML patients (I don't know whether the technique is also used in BMT for other conditions) as between six to twelve months post transplant, very high resolution PCR tests detect a resurgence of leukaemia in around 80% of patients.

The use of DLI helps to reverse this increasing trend and return the patient to a state of clinical remission. This is achieved in nearly all cases, starting with small does of donor lymphocytes that are gradually increased until the PCR tests return negative results.

However there is a greater risk of this procedure activating chronic graft vs. host disease (GHVD). [See the diary entry of 3rd Oct for more information on why this happens.] The risk of incurring GVHD is around 29% in patients receiving DLI within 12 months of transplant. The risks fall significantly to around 9% if treated after twelve months following the transplant.

I am currently just under 9 months post-transplant, which means that Francesco does not want to start me on DLI until after February next year. There is one problem with waiting until then: my leukaemia will slowly increase and become more predominant. As my donor is a female who has given birth, this means that it is even more import to leave a greater gap between transplant and DLI, as there is a higher risk of GVHD.

There is currently one option that allows me to wait for the next 4-5 months without letting the leukaemia advance - Glivec/Gleevec. The difficulty at the moment is in getting hold of the drug. In the UK there has been a real struggle to get Gleevec due to the cost of the drug. [follow this link to find out more on Gleevec.] This drug has been extremely successful in all it's trials when compared to Interferon which was previously used to treat the disease, yet despite this it seems that the national institute for clinical excellence (NICE) has included various caveats with respect to its supply on the NHS. Basically I can't have it as I haven't been treated with interferon. This means that I can't stem the resurgence of the leukameia as I don't fall into the narrow criterion controlling the availability of Gliveec on the NHS.

How ****ing dumb is that? I'm not the only one affected, as this affects hundreds of other patients, and it throws a spanner in the works. I've worked really hard to recover from a potentially fatal BMT, to learn that I can't have Gleevec. So what do I do? Let the leukaemia spread until it's safe to have DLI, except I'll probably have dangerously high levels of leukaemia? Or do I have the DLI now and run the risk of getting chronic and debilitating GVHD? It's not a very good set of options to have to weigh up is it?

Well that's the NHS for you. It's a bit like the cardiologist who has just found out that you have a severe heart problem that requires a triple bypass, and says that he'll have to wait until you have a massive heart attack before giving you corrective treatment.

The drug is too expensive to buy 'off the shelf' costing around £2400 per month in order to have a 400mg daily dose. I've also got a bone marrow aspirate to look forward to on Wednesday 30th Oct. This is when your hip bone is skewered by a thick, six-inch needle to take a sample of the bone marrow.