Last week I had my 9 week appointment for my clinical
trial. I thought that the news was
pretty good at the beginning of my trial, but I can say that this appointment
pretty much shocked everyone. Wait for
it, wait for it.... My blood numbers are
at their lowest point in 8 YEARS. My
physical exam showed no palpable lymph nodes or spleen. All of this is pretty amazing news. End of short report.
Although we don't really know the extent of the remission,
everything points to my new drug, Venetoclax, working quite well. There are some unknowns here. We don't know whether this is the Venetoclax
alone doing the work, or has it made my old drug, Ibrutinib, start working
again. We do know the old drug,
Ibrutinib, was losing its punch. All the
tests and numbers pointed to it becoming less effective, but there is some anecdotal
evidence that these two drugs, working
together, are a one-two punch and it seems that working together they work
better than working on their own. What
we do know is this combination is a very fast acting combo. When I was on my last trial of Ibrutinib
alone it took over 2 years to get my blood numbers down to normal range. With this combo, I got into normal range in
ONE week. Quite a powerful treatment.
In November I will have another CT Scan and Bone Marrow
Biopsy that will tell us the depth of my remission. Right now, all signs are pointing towards a
fairly deep remission.
This trial has not been without some minor issues. It requires a lot of time at UCSD. I have made 7 visits in 9 weeks. I am
now on a monthly schedule until the end of the year. Before this trial I had some GI issues, but
it seems they are more frequent since I started the trial. It also seems like I am bruising more easily. I discussed this with my medical team last
week and it may be that my old medicine is working better, and hence more
bruising since bleeding / bruising issues because that is one of the main side
effects of my old drug. And I still have
not gotten any relief from the horrendous co-pay that I am on the hook for.
I am still patient #1 (and only) in the world on this
particular trial. I was a little
concerned that if no one else joins the trial that they would stop it, but my
medical team assures me that there are no plans to stop, even if they don't get
any more patients.
I have been interviewed twice in the last week by people that are putting
together CLL information packages for various companies. I don't mind sharing my journey with people
in hopes that it will benefit not only the patients, but the medical community
as well.
Terry
