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During my last post I reported
that, because of my platelet count had improved and that I was responding to
treatment. I also needed a blood transfusion in order to improve my
haemaglobin. All this was sufficiently positive that I decided to
return to my volunteering role. The last few days have, however,
been truly dramatic.
First the good news: Yesterday I
received my second Covid jab. The team at my centre (the former RAF
Locking) are so very friendly and efficient. I can only thank them
so very much. As happened with my first jab, the second has now appeared on my health records.
At my routine consultant’s
telephone call it became apparent that although my platelet count had continued
to improve, my paraprotein count was also rising and thus indicating that the myeloma is relapsing. My consultant then
phoned me again to advise that my latest paraprotein result was in and showed
further deterioration. Accordingly I was now off the Daratumumab
treatment and invited to a video conference to discuss the potential of being
recruited onto a CAR-T Cell trial.
Life is about to get really quite
complicated and unpredictable. Firstly, my consultant wishes to
assess some of my symptoms so tests and scans will be necessary. The
dates will be dependant on NHS facility availabilities. When completed I will
hopefully then be recommended for a trial treatment called CAR-T Cell
therapy. There are two paths called Arms which are chosen by randomisation. In Arm A, I would receive fairly standard therapy. In Arm B, I would receive the CART Cell therapy. This requires taking some of my T Cells, which are part of
the immune system, and sending them to the USA. Once processed they
are returned to me and will hopefully then attack my myeloma. The
overall process is complicated, lengthy and not without its risks.
If recommended for treatment I will
then be subject to the following schedule:
- Screening
(28 days)
- Apheresis
(collection of T Cells taking just 1 day)
- Bridging
Therapy (minimum one cycle taking 28 days)
- Conditioning
(chemo in hospital taking 3 days)
- CAR T Cell
infusion (Probably over 1 day, in hospital)
- Hospital
monitoring (minimum 14 days)
- Home
monitoring thereafter
Apheresis to CAR-T Cell infusion is
expected to take 5 to 6 weeks. Time in hospital will be dependant on
side effect – some of which can be severe but treatable.
In recognition of what my future
now holds, and in particular its unpredictability, I have decided, and with sadness, to resign
from volunteering. This time I did not consider being placed on
sabbatical to be appropriate.
Yesterday
is the past, tomorrow is the future, but today is a gift
That is why
it is called the present.
Bill Keane
Keep safe, keep well and KBO
Stephen
