It has been 6 months since I started my new trial and
yesterday I got the results of how it is going so far. Based on the CT Scan and the Bone Marrow
Report I am doing VERY well. End of
short report.
I am going to get a little medical here, but I hope that my
explanation will make sense to most people.
If you remember, in January it was determined that even though my
numbers weren't off the charts there were indications that my trial medicine (Ibrutinib)
that I had been on for 4 1/2 years was just beginning to be less effective than
it had been. Because of my previous
treatments and my poor genetic markers, my options had become limited. I searched all over the country for
treatments that would fit my circumstances, and really did not find anything
that fit my situation. I was willing to travel, willing to enter another
Clinical Trial, my timing wasn't right and there were only a couple that might
have been opportunities, but they all had some issues. Once again in
my 18 year journey, 'right place, right time' happened. Dr. Choi , my doctor, told me he was creating a trial for people just like
me. I would remain on my old drug,
Ibrutinib, and we would add a new drug, Venetoclax. The idea was that the new drug may once again
make the old drug effective, and/or the new drug would do the heavy lifting and
bring me back into remission.
Unfortunately with me still being the only person on the trial there are
no other people to compare my results to.
So the bottom line is that it is working, but we really aren't sure HOW
it is working.
How do we measure the fact that it is working? There are actually 4 different ways. The first is thru normal blood tests, and
those results have shown a dramatic improvement, getting all my blood numbers
into NORMAL range, and the best they have been in over 8 years. The second way is thru a physical exam to
palpate the lymph nodes and spleen. So
basically those nodes and organs that you can feel near the outside of the
body. Right now they cannot feel any of
these. The third way is to measure the
results of a CT Scan that looks at the internal lymph nodes. All of my lymph nodes have shrunk by at least
50% and they appear to be normal in size.
The last way to measure is thru a bone marrow biopsy. This is where they can tell how much disease
is actually in the bone marrow. When I was
first treated in 2007 83% of my cells in my bone marrow had CLL in them. In May at the beginning of the trial I had
19% CLL in my cells. And this last test
done 2 weeks ago only showed .3% in my bone marrow. That is NOT a typo. It is 3/10 of 1%. If this number had been 0% then I would have
been classified as MRD negative. Which stands for Minimal Residual Disease negative,
which means in 100,000 cells they can find NO leukemia. Actually I was not surprised that they still
found some disease. I have had a LONG
journey, Many, Many treatments and have a VERY complex type of CLL, so I am a
tough patient. They will run another
bone marrow biopsy in 6 months to see if we can get rid of this LAST bit of
disease. Even if I get to no measurable
disease this doesn't really mean that I am cured. All it means is at that point in time they
cannot find any disease. It doesn't mean
that it will never come back, because it may come back in the future
sometime. That being said, the clinical
trials of 'untreated' patients (those that have never had any type of
treatment) that are on both of my drugs are showing an extremely high rate of
MRD negative two years out, which is extremely promising.
But that is actually not all that has happened since my last
post. In the middle of October we went
to Texas to visit my Dad, Lois, Becky and Cherese. After two days there I developed a fever. No other symptoms, just a fever. I felt so bad we came home two days
early. It was a good thing we did
because the fever lasted 21 days. Even
with my 11 years of treatments, I have never felt so bad for so long. Some days I was in bed for 16 hours. You can only watch so much of the migration
habits of penguins on the Animal Planet.
I was on three different antibiotics, had 3 doctor visits, one hospital
ER visit, multiple x-rays, one CT scan, multiple blood tests and cultures. The hospital of course wanted to admit me in
case one of the cultures came back positive, and I politely declined, not
wanting to expose myselft to something even worse on the off chance the test
came back positive. Of course the test
came back negative, so it would have been for naught. All of this testing came up with FUO. This of course is a very technical medical
term which means Fever of Unknown Origin.
Bottom line they have no idea what caused it. It was probably a virus, probably picked up
in the airport or on the plane, but no one really knows for sure. I never stopped either of my two CLL drugs
because the risk of stopping was greater than trying to rule it out as a
cause. Plus there has been no reported
fever only side effects on either one of the medicines. So it cleared up on its own.
I did have another infusion this week and had a fever reaction
4 hours after that, but it went away by morning. Maybe it was a onetime thing. I hope so!
Because of the fever, I missed moving our
daughter Sarah and her family to Arizona, and had to cut our trip to Texas
short. It is a good thing I got well
because we had a golf outing to Temecula planned this week. On Sunday we leave for Maui for a week and in
late December we are going to Italy for 2 weeks. I can't afford to be sick.
I continue to spend time with all of our grandchildren and
this month we even got to visit with all of them, even though it wasn't all at
the same time. They are truly a
blessing.
I have also begun to spend more time with the nonprofit I am
involved with the CLL Society. I am officially the Director of the CLL
Society Support Network. I oversee all
of the 28 CLL Specific support groups in the United States and Canada. I have personally trained 50+ coordinators on
how to run their support group and adhere to the guidelines that we have
established. I have also personally traveled to about 10 of these cities to
assist in their establishment. I
continue to speak at various Educational Conferences and find it very rewarding
to be able to 'give back' some of what I have learned. I know some of you may find it surprising
that I would like to get up in front of 200 people and speak. (Ha, Ha, Ha). We
pride ourselves in being the only leukemia group in the US that devotes itself
only to CLL. With CLL being the most
prevalent form of Adult Leukemia, we felt that there was a need for a place
people could go for Support and Education specifically about CLL.
On another positive CLL note,
my friend and founder of the CLL Society, Dr. Brian Koffman has just posted
that they can find no CLL in his body after undergoing a novel treatment called
CAR-T. There is hope that this will be
one of the ways we can CURE CLL in the future.
It is not for the faint of heart and should be looked at very carefully
right now. Here is a link that describes
his journey Dr. Brian
Koffman's CAR-T Journey Brian is
also being honored at a dinner before the ASH meeting (Amercian Society of Hematologists)
that is honoring 4 people who are Heroes in the CLL Community. It is quite an honor for him to receive this
award.
Thank all of you who contributed to my link to the CLL
Society fundraising page around my birthday.
I had no idea what to expect, and the response was overwhelming. Donna put the same link on her Facebook page
and also wants to thank everyone that contributed. We are truly grateful. Unless something
radical happens I probably won't post anything until after the new year. so I
will take this opportunity to wish everyone a joyous Christmas and Happy Hanukkah.
Terry
