I guess it is only appropriate that during this Thanksgiving
season I offer up my own THANKS. I have
now been on the drug Imbruvica for 2 years.
I had my 2 year trial check up with my doctor at UCSD last week and
everything is going well. I am VERY
close to what they call a Complete Response (CR), where the peripheral blood
counts are in the normal ranges. As I
mentioned in my last post, this has been a very SLOW process that has taken
over 2 years, but it has always been moving in the right direction, even though
it seems like it has been at a snail's pace.
So, I will be thankful for slow.
My physical exam also showed no evidence of disease, and I am having no
other symptoms that would indicate a disease progression. I feel really good physically, and play golf
at least weekly, and If I feel up to it, walk the course with two of my friends
who are both over 70.
The question always comes up about how much longer will I be
on this trial, and the answer is that no one really knows. I do know I have appointments set up until
October of 2016, so it is at least that long.
The information that I have always received is that this trial (the
Resonate I trial), is that one that got the FDA to approve the drug for CLL
patients (only for certain situations), and they really want to continue
gathering long term data to help justify future approvals.
I can't say that I am happy to have been diagnosed with CLL,
but I think I am making the best of it.
I am very involved in the CLL community, which is kind of a two edge
sword. On one hand I am always thinking
about it, but on the other hand I feel like I am contributing to the betterment
of the CLL community. I have become one
of the main coordinators of the Orange County CLL support group and my role is
to lead the meetings every month. I am
on the CLL Society Patient Advisory Board for the CLL Society . This is a non-profit that has been setup to
be a worldwide resource for CLL patient education and support. I have also been given the opportunity to be
interviewed by a number of market research firms on behalf of drug companies
and there was even an article written about my journey in CURE magazine. You have to go to Page 3 to get to my part
of the article. CURE Article. I am also speaking at a
CLL Patient forum at the City of Hope in Duarte in December to a group of CLL
patients from around Southern California. COH Patient Forum
. I am also in contact with people
diagnosed with CLL, who don't feel like a Support Group is the place for
them. Some people I know don't want to
think about their CLL, and that is a personal preference that I respect. For me, it seems like being involved is the
way that I cope the best.
There have been so many advances in the last 2-3 years that
the future looks very bright for newly diagnosed CLL patients, or those who
have relapsed and need a new treatment.
So if I do need treatment again, I will have a host of options to choose
from.
Since my last post we have done a bit of traveling. In August we went to Seattle visiting family
and for a wedding, then went to Montana for a week. Then we spent some time in Lake Arrowhead
with our friends Bob & Dianne. Then
in September Donna went to Montana to be with our daughter Sarah who had emergency
gall bladder surgery (she was 4 months pregnant at the time), after a week
there she came home and the next day we left for Cancun with our friends Tom & Sandy for a week. Then in October we
went back to Montana (for a trip we had planned before the unexpected surgery), We then went to Las Vegas to visit Donna's sister and our niece, and checked off one of Donna's bucket list items, seeing Elton John in concert. Then came home and went to Temecula for a golf outing with friends. For a while there, it seemed like we were
never home. We only have two upcoming
trips planned, one to Berkeley for a couple of days to visit Matt, Randi and
Naomi, and then in January we will be going to Montana for some period of time
for the birth of our 5th grandchild.
Montana in the winter...sounds like an adventure to me.
