Update on Progress
I just wanted to let everyone know how it is going after 3
weeks into my new clinical trial. I just
have one word as of right now. WOW! End of short report.
I had pretty high expectations of how I would respond by
adding a new drug (Venetoclax) to my previous clinical trial drug
(Ibrutinib). And I was not
disappointed. I know it won't mean much
to most people if I throw out numbers, so I will keep it simple. My counts are all within normal range, and
they are the lowest they have been in over 6 years. All of this has happened while only being on
the drug for 3 weeks, and I just this week I started at half strength of my
final dose. There has also been a noticeable decrease in
my lymph nodes, which had started to increase in size. So far the only side effect has been a little
mid day fatigue, but nothing major, and this could be in part due to working
pretty hard around the house, and playing golf twice a week. Whether or not I will see any increase in
the side effects as we get to the final dose strength remains to be seen, but
so far, so good.
My major issues so far has been the time (and financial)
requirements of being down in La Jolla for numerous trips (so far 10 days down
there). We have been staying down there overnight when
there are many appointments in consecutive days, but after next week, it will
go to just monthly visits, which will be nice.
But there could be a lot worse places to be than in La Jolla.
I am still fighting the system to try to get some relief on
my co-pay for one of the drugs. Yes, I
am glad that I have insurance to pick up some of the load, and that the drug
seems to be working, but I will still be on the hook for about $10,000 out of
pocket. I have done patient advocacy
work for two of the three drugs companies that are involved in this trial, and
have contact them directly trying to get to the RIGHT person. Also, my medical team is reaching out to
their contacts to try to assist me in my efforts. As my PA down there says, ' the answer is
always NO, until you ask'. My arguments for
assistance seem completely logical to me, but sometimes logic does not enter
into the picture.
Since my last post, I have passed a couple of anniversaries. In May, I passed my 13th year of being
retired from the City of Long Beach, and in June, I passed my 18th year
anniversary of being diagnosed with Chronic Lymphocytic Leukemia. Seeing as how the life expectancy was 5-10
years when I was diagnosed, I have screwed up their data points on that one.
We are not letting any of this get in the way of life, and
are going to Cambria for a couple of days this week, to get away and do a
little wine tasting. And then next week
we are going to help our daughter, Sarah, her husband Kevin and the 3 boys move
from Montana to Arizona. But they will
all have a short visit at our house until about Mid August when they will
'officially' go to Arizona. As soon as
all of these initial trial visits settle down, hopefully we can plan on some
bigger trips.
I am still heavily involved in the CLL Society's Support
groups, and still lead the Orange County CLL Society Support and Education
group, which now has an email list of over 160 people, with an average of about
30 people showing up at our Monthly Meetings.
I also can't believe that we have established 26 CLL specific support
groups in the last 2 1/2 years, with about 3 more scheduled to start before the
end of the year. I was also privileged
to go to Boston last month to be a part of a Patient Forum for a drug company
that has a new drug for CLL in the pipeline and were looking for patient input
before they roll it out.
I know some of you were anxious to know what has been going
on, and never feel like it is a bother to contact me. And good or bad, I will give you the
answers. I appreciate all of the
concerns and the prayers that have been directed at me. They DO make a difference.
Terry
