I just realized that it has been 6 months since I last
posted an update, and I guess I need to share some greatly anticipated
news. If you have been following my
journey (blog) for a while you might remember that I entered my 3rd clinical
trial in May of 2018. Even though the
initial results were very promising, there needed to be one more test to
determine how well I was actually doing.
So in mid October, they did a bone marrow biopsy to determine how deep
the remission actually was. I have since
gotten the results of this test, and THEY CAN FIND NO EVIDENCE OF DISEASE. End of short report (you know who you are).
This confirmed two previous tests that they had run but with
much greater accuracy. The test is
looking for one cell in 100,000, but if I read the report correctly, they
actually tested over 434,000 cells.
Don't ask me how they do this, it is way beyond my pay grade. This does not mean I am CURED, but what it
means is that in the area they evaluated they could find no disease. If they can't find any disease in the bone
marrow (called Minimal Residual Disease
Undetected (MRD-) it has been shown that you will probably have a longer
remission. Cancer is a pretty sneaky
disease. It can hide out in places they
can't test, it can mutate, so it goes around the pathways that are being
blocked by the medicine, or it can decide to change into something else. I am not naive enough to think that I'm over
all of this, but I will say that this is the FIRST time in over 19 years that
they are unable to find any disease. I
still continue to look at possible next steps, if and when I relapse once
again.
The question now is what do we do? Remember, I am on two pretty powerful
medicines, so we could stop one of them (which one, I am not sure), we could
stop both of them, or we could do nothing and keep taking both of them. I have an appointment in mid November to try
to figure some of this out, but I doubt we will come up with an answer at that
time. All of these scenarios have a lot of unknowns associated with
them. That is why it is a Clinical
Trial. To be honest, they just don't know
yet.
All in all, I have been feeling pretty well. A few nagging side effects, but I deal with
them, plus, they may or may not be caused by the medicines. Feeling well has allowed us to do some
traveling. We have visited our kids who
live out of the area, and had a couple of big trips, one to Israel, and one to
Kauai. We are looking forward to
Christmas, when all 10 of our grandchildren and their parents will be around to
celebrate the holidays. I am still doing
work for the non-profit, the CLL Society, and still lead the Orange County
support group. I have also been asked to
do some speaking for another group, and should start that after the first of
the year. I hope sharing my story in
some small way, helps others who are dealing with CLL.
I am truly a Blessed man.
Terry
