29-1-2001

WBC : 6.8
Neut : n/a
Hb : 14.3
Plts : 238

29th January:   Hammersmith Hospital
Monday 29th January went up to Hammersmith by my self for the first time to meet with Prof. Goldman. The aim of this visit was to find out more about getting hold of STI and about the recent publicity about killer T-cells programmed to kill leukaemic cells. With respect to the latter, the prof explained that the announcement (click here to view the news article.) were premature in that this was still being researched and at least 18 - 24 months away.

At the appointment, I explained how I was looking at STI as a possible long term solution to the leukaemia, but also as a method of giving myself time, as explained in the previous diary entry. He agreed that this was the best approach given the circumstances, but that this doesn't necessarily mean that a BMT will be just as easy if the STI treatment fails.

In other words, since the STI is a new drug with no longer than 2 years worth of data available, it is not known how the blood will react after long term usage of the drug. STI should give a 'chromosomal cure' from CML in approximately 50-60% of cases. However this is not the same as a 'cytogenic' or 'molecular' cure that occurs in successful bone marrow transplants.

Most CML cases are attributed to a faulty chromosome called the Philadelphia chromosome, named so after the city in which this was first discovered. Parts of a chromosome have translocated on to another part which results in the Philadelphia chromosome. This chromosome can no longer properly regulate the production of normal mature white myeloid cells. STI can remove these faulty leukaemic cells with the Philadelphia chromosome, but there may still be important and relevant signs at a cellular level which may or may not cause the leukaemia to reoccur in the future, possibly more aggressively as with interferon treatment. It is also acknowledged that the treatment of CML in the aggressive phases with BMT carries with it far greater risks than a BMT at the early more stable phase of the disease.

Herein lies the crux of my, and probably most CML sufferers' problems given the new and 'exciting' drug STI. Do you take the drug - correctly - to give yourself the possibility of a cure, and also to buy time for newer more successful treatments, but should you relapse, then the prospects deteriorate. Or, does one go for a BMT given the risks but also the potential of a life long cure. That fact that STI will be unavailable in the UK on the NHS for at least a year, and should the drug be purchased overseas where it becomes available sooner it will cost in the region of £15-20,000 for 12 months treatment, doesn't exactly make things any easier.

This is why the decision to go for a BMT or STI resides in the compatibily of the potential donor. Should the best potential donor, after all the searching be a very close match, then it may be better to go for a BMT since the risk of rejection should be reduced due to the high compatibility of the blood. However if the best donor is only a poor to average match, maybe the best solution would be to go for the STI. The conclusion of the meeting was just this; wait until we have the best possible donor, then assess whether the donor is good enough to take the risk of the BMT or to start STI.

There was still no news of the German donor, and extra blood was taken to carry out new blood tests with an American donor. My next meeting is in 1 month, so the results will hopefully be available from at least one of the donors.