Once again, I visited the hospital on my own, and saw yet another
member of the 'Team'. He was a very pleasant consultant who took
all the time to answer my questions and discuss in details my concerns
about the possible treatments; most notably the use of either BMT
or STI.
Infact the consultation was very interesting, and I learned a little
more about the disease, which probably has something to do with
seeing different consultants each time who have different approaches
to answering sensitive questions. One of the good aspects of these
consultations are the honesty and directness of the answers to my
questions. Nobody tries to downplay the severity of the disease,
yet they are ready to provide encouraging suggestions and comments.
One example is the advise that a serious illness like a cancer or
other related problem is fought by the body, mind, medicine, and
family and friends. Whilst a suggestion like this may seem quite
obvious, it seems a lot of people have difficulty in coming to terms
with such a disease and in being able to fight it.
With regard the 'donor hunt', the details of the donor search are
shown below, follow by an explationation.
| Bone
Marrow Registers |
A/B/DR
Split |
A/B
Split |
DRß1*
Result |
ANBMT & BBMR
(UK) |
1 |
6 |
Have not been able to trace donor. |
| Canada |
1 |
13 |
1 mismatch. |
| Germany |
2 |
75 |
1 DRß1* subtype mismatch.
1 DRß1* subtype match.
|
NMDP
(USA) |
3 |
28 |
1 deleted from register.
1 temporarily unavailable.
1 partial DRß1* match, also unavailable until 30-APR-2001. |
The A/B spilt used to be the technique that was used to match tissue
types several years ago. Whilst they were not the most accurate
techniques, the were the basis for a starting point in the tissue
matching process.
The A/B/DR split is a more detailed way of measuring a person's
tissue type, and the reason that there are fewer donors with my
A/B/DR match. If the patient and donor have the same A/B/DR match,
then there is a possibility of a 'match'. In fact none of the matches
are ever perfect except those of identical twins, so the match should
be as good as possible. The DRß1* is an even more detailed
analysis of the tissue types.
As can be seen from the form above, some patients have shown DRß1*
mismatches, whilst others have withdrawn from being a donor. My
best chances rest with the German, and the one US donor who is currently
unavailable. The German donor's blood is being examined with mine
in a CTLP (Cytotoxic T-Lymphocite Precursor) test, that tries to
determine the level of Graft vs Host (GVH) disease. GVH is the donor's
blood rejecting or trying to fight my body which may not be seen
as a perfect environment for the donor marrow. Since the donor's
tissue is not identical to mine, there will be a degree of reaction,
and the CTLP tests are a method of determining whether the reaction
will be a mild or severe one. The results of the test can therefore
act as a determinant to the level of GVH, and have a bearing on
a potential BMT's success.
We shall have to wait until the next visit at the end of March before
we know the results of the CTLP tests. In the mean time, I have
been given some detailed literature of the BMT procedure, in addition
to a book co-written by Prof. Goldman on the details of Leukaemia
and other blood related cancers. Entitled, "Understanding Leukaemia
and Related Cancers", the book written by Tariq Mughal and
John Goldman, published by Blackwell Science is a fairly comprehensive
explanation of the disease, the potential treatments and outcomes.
It is aimed at the public, but still covers all the aspects of the
diseases in details.
My blood levels are still good, and I have still not had any reaction
to the drugs (Hydroxeurea) that I have been taking for 10 months.
