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.