Well, October 25th I had my 3 year anniversary on the
Clinical trial drug Imbruvica. At my
doctor's appointment he said that based on my physical exam and blood work he
now considered me in Clinical Remission.
This does not mean that I am cured, but means that without more
extensive tests you could not tell that I have CLL. This pretty good news and the end of my short
report.
For a more medical explanation, when you are treated for CLL you either get a
response from the drug, or not. If you
get a response but you still have lymph nodes or spleen that are palpable, have
blood numbers out of normal range, or have any 'B' type symptoms (fatigue,
weight loss, night sweats, etc) then you can have what is called a Partial Response
or PR. Because the drug that I am on is
very slow acting, I was in a PR state for 3 years. At my last physical exam I showed none of the
symptoms that would be included in a PR, so he declared that I was in Complete
Response or CR. According to the Trial
data only about 14% of patients in my category get a CR, so I am very thankful
for that. I am hopeful that I will
continue on this Clinical Trial (which has an expected term of 5 years) and if
and when I need more treatment there will be something even better out
there. The strides that they have made
in just the last 3 years have been truly amazing.
Since I haven't posted for about 6 months there has actually been quite a bit going on
in my life in that short period of time.
In my last report we just had our fifth grandchild, Otto. Since then we have had two more
grandchildren, Maebel Olive Evans (parents Jeff and Kristen) and Liv Marie Evans
(parents Matt and Randi). We are now up
to 7 grandchildren, all 5 and under.
Quite a brood.
Donna and I went to Austin in October to celebrate my Dad's
official 90th birthday. We had a small
celebration with dad and his wife Lois, my sister Rebecca and her partner
Cherese, and some Austin friends of my dad's.
Then the first week of November we had the REAL party at our house of
all the family and had about 25 family members here for that. It was the first time my Dad had seen 3 of
the new grandchildren, so it was special for a number of reasons.
This last few months have not been the happiest of
times. 2 months ago, within two days of
each other, we lost two warriors in their fight against blood disorders. Peggy, who I had known for over 30 years at
the City of Long Beach, lost her courageous battle with MDS (Myelodysplastic Syndrome) and Dylan, the
28 year old son of my long time barber, lost his battle with ALL (acute
lymphoblastic leukemia). Both had fought
for over 2 years and it was a very tough to see them both succumb to their
diseases. RIP Peggy and Dylan.
I just read Tom Brokaw's book A Lucky Life Interrupted and have
to say that it is an extremely well written book that I can really relate
to. I told Donna that the introduction
is almost a word for word explanation of how my CLL has affected me
personally. Figuratively (not literally),
I could have written those words. For
those of you not familiar with his book, it is his journey with Multiple
Myeloma, which like my blood cancer, Chronic Lymphocytic Leukemia, has no cure,
but can be treated. It is a very well
written book by someone that we are all familiar with. He not only talks about his disease, but also
the state of our broken medical system, the high cost of drugs, and the lack of
communication even between his team of world class doctors. It is a good read for anyone who has been
affected by cancer or knows someone who has been affected.
We have been extremely busy since
Labor Day, and have gone on 10 trips. We
have been to Berkeley, Montana, Austin, Kauai and Maui, most of them pleasure,
but some have been in conjunction with my participation in the non-profit organization The CLL Society. I have been to Madison, WI,
Charlotte, NC and Tampa, FL. It looks
very promising that we will have CLL specific support groups in those areas. At the CLL Society we are doing a lot of
outreach to other cities to try to establish groups there. I am still leading the Orange County Group
which meets monthly at UCI Medical Center and we now have a mailing list of
over 100 patients and caregivers, and usually have between 20-30 attend each
month.
Nowhere in my original diagnosis in
2000 did I expect to be blessed like I am.
I am blessed with having a wife that literally saved my life by doing
research and prodding. When I was
diagnosed I never thought I would see all 4 of our children married, and 7
wonderful grandchildren. I didn't think
I would see my Dad hit his 90th birthday (and Donna's parents hit their 98th
and 97th birthdays). I am blessed with
wonderful friends, some of them lifelong. But I am cursed with having golfing buddies
that always ask how I'm doing, but never stop with their incessant comments
about how bad my golf game is. That 5-10
year life expectancy at diagnosis is LONG GONE, and here I am working on 16+
years, with many more to come.
