I can’t tell if anyone is reading these posts, but I want to
write them down because they are very meaningful to me, and it could be that
someday a grandchild or a great grandchild might find them of interest as
well. So: My friend Karen D accompanied
me in March to my 23rd NIH appointment. The PA, Janet V., went over
my lab results with me, and all look good. But when I met with Dr. F a little
later, some of his remarks filled me with concern, or more accurately, anxiety.
He told me that even though I was doing very well on the Ibrutinib, my lymph
nodes would have to continue to reduce in size or I would be taken off the
clinical trial. He then suggested some
other drug and clinical trials I could look into if I had to stop taking Ibrutinib. None of these were being offered at the NIH,
and I knew I would be unable to travel to other facilities to participate in a
trial. The NIH trials are the most
economical trials ever. Nothing else
even comes close. This was all the more
shocking to me because I had been told two years before that I would remain on
the trial unless the lymph nodes increased by 50%. Dr. F. specifically said during this visit
that even if they remained stable, I would no longer be in the trial, because
they had to be continually reducing in size.
I didn’t understand this change in policy then, and I still don’t
understand it today. But I decided to
make a concerted effort to calm myself down, and to trust God’s plan for
me. So perhaps that was the point all
along. It brought me to the realization that I can greatly control, or at least
moderate, my emotions in difficult times, and I have been using this new-found
ability to good effect ever since!
My local oncologist added to my acceptance of this wrinkle
in the clinical trial’s requirements when she offered to
prescribe Ibrrutinib for me should it become necessary. However, the great nnews I received at my 24th
trip to the NIH on June 15th is that my lymph nodes are continuing
to reduce in size, and I am still in the trial! Dr. F., whom I truly respect and admire, is
leaving the NIH for another position, so I consulted with Dr. Adrian W. and Dr.
Ahn at this appointment. Interestingly, it seemed to me that Dr. W was
surprised upon hearing that my continued trial participation had been in
question, asking me why I’d thought this was the case. I’d heard him clicking around on the
computer, probably searching for notes on my previous appointment. When I explained what I’d been told in March,
he only listened, making no comment. I
would have liked to know what he was thinking.
It may have cleared up the confusion surrounding the trial
eligibility. But one more happy
circumstance on this recent visit is that I was able to forgo a bone marrow
biopsy. Last year’s good results
indicated a follow-up BMB was unnecessary at this time! It’s hard to believe, but
my fifth year on Ibrutinib has begun. I
hope it goes on and on. But if and when
it must come to an end, my gratitude for this experience will certainly
remain. I’m also very thankful to my
sister, Julie, for accompanying me to the NIH in June!
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