I just noticed that it has been about a year since I posted
anything and even though everything is still going well, I feel guilty about
not keeping everyone up with my status. I run into people and they ask me, 'I haven't
heard anything lately and I was worried.'
Well, no need to worry, I am still hanging in there.
When I was originally diagnosed in June of 2000, I was given
a 5-10 year life expectancy. I guess I
must have screwed up their survival curves.
On October 29th, I officially passed my 4 year anniversary on the
Imbruvica Clinical Trial. Even though
397 people started the trial, there are probably only about 200 left taking the
drug. Those that stopped did it for a
variety of reasons: disease progression, they could not tolerate the side
effects, they just stopped taking it, or they moved on to another drug. I feel fortunate that I am still able to take
it with few side effects and it is still keeping my CLL at a relatively stable level. I know I'm not cured, but a least it is being
managed and hopefully there will be another drug out there in the future that
will get me off of 3rd base and 'get me home'.
One of my blood numbers is increasing at a slow pace and in January they
will run a deep sequencing test that can determine if I will become resistant
to the drug in the future. If that
result comes back positive, we will have to start looking at other treatment
protocols. Even if I do progress, my
doctor thinks it will be a slow progression and said, 'we will worry about that
in 3 months'. But with the approval and
testing of many new drugs to treat CLL, there will be a lot of options for me
in the future if that happens.
The Evans family has once again had some additions to the
brood with daughter Sarah and her husband Kevin having identical twin boys in
August. Levi and Gage make it number 8
& 9 grandchildren. Because they were 8 weeks early, we wound up spending a lot of time in Montana, since the babies
were in the NICU for over 4 weeks in Billings, which is 100 miles from their
home in Livingston. They are home now
and doing great. No issues even after
only weighing only about 3 1/2 lbs at birth.
I still lead the Orange County CLL Society Support group
which meets monthly at University of California Irvine (UCI) Medical
Center. We now have over 150 people on
our email distribution list, which makes it the largest CLL Support group in
the country. This year I have given
talks at CLL Society Education Conferences at Huntsman Cancer Center in Salt
Lake City, at the City of Hope in Duarte, and at University of California,
Irvine.
Last Saturday I went to the National Institutes of Health (NIH) in
Bethesda, Maryland to give a talk on Clinical Trials. I can honestly say that I was humbled to be
in the same company as some of the world's top CLL experts. The facility is amazing, with 75 buildings on
300 acres. No matter what your political
stance, the Federal government's support of this facility is key to the health
and well being of ALL citizens. The work
that they are doing there is truly amazing and the advances they have made in
treating all diseases is profound.
Next year I have talks at Moffitt Cancer Center in Tampa
Florida and again at the City of Hope in Duarte, CA. I lead a team at The CLL Society (the non-profit I am involved
with) that has now started over 15 CLL specific support groups across the country,
with one in Canada and one in Ireland.
We are on track for starting another 10 next year. I'm pushing for the one in Maui to get started. It is really rewarding to be able to 'give
back' and share my journey and some of my 'acquired' knowledge to people
affected with Chronic Lymphocytic Leukemia.
Other than a lot of time in Montana we haven't done any
major traveling this year, just short trips to Austin to see my Dad, his wife
Lois and my sister Rebecca and her partner Cherese.
A couple of trips to Albany (CA not NY) to see Matt and Randi and
the girls. Also a trip to Fresno to see
my aunts, and a couple of golf outings with our golfing friends.
We are planning on having all 9 grandchildren here for
Christmas, so it will be slightly chaotic for a time, but worth every minute of
it.
At Christmas I always reread the poem called "A Visit from St. Nicholas' or as it more
commonly known, 'The Night Before Christmas', by Clement C. Moore. The last line of this poem is often quoted as
'Merry Christmas to all, and to all a good night'. I want to make sure that you all know the
CORRECT line as it was originally written.
HAPPY Christmas to
all, and to all a good night
And of course keeping with the real reason for the season,
the famous quote by Tiny Tim in 'A
Christmas Carol':
"God
bless us, every one!"
Terry
