Hi Friends,
It’s
been a busy few weeks.
Last
week was exciting as we marked the first year since we launched our
website, published our first 2016 issue of
The CLL Tribune, and
fielded a short survey in our Reader Poll on how we patients and
caregivers make decisions about our therapy. I hope to present the results at a
symposium at the 2016 European Hematology Association Congress in Copenhagen in
June, so I am asking you to please complete it. It takes less than 5 minutes.
Many thanks to the 78 folks who have already done so!
Two
weeks ago in Anaheim, I spoke in front of more than 550 patients and caregivers
on behalf of LLS at their southern Californian Blood Conference. My topic was
“How to be your own advocate”. It was a great privilege, in every way, to be
able to give such a talk after 10 years of dancing with my CLL.
On
April 2nd, the CLL Society had an active table sharing CLL
information and resources at the LRF Lymphoma Workshop in Manhattan Beach.
Both
meetings had superb CLL breakout sessions, in Anaheim by Dr. Tanya Siddiqi of
City of Hope, and in Manhattan Beach by Dr. Herbert Eradat of UCLA. Thanks to
them both for donating their time.
At both
meeting we collected signatures for those interested in getting a CLL support
group going on the west side of the LA Basin. It you missed the meetings and
are interested, please send us an email at
support@CLLSociety.org and we will make you aware of our
interest survey when it launches.
This week
in the 2015 Conference Coverage section of the
CLL
Society website,
we have posted an interesting article written by Dr. Zeev Estrov from MD
Anderson Cancer Center describing the abstract they presented at ASH 2015
focused on exploring treatment options to address CLL fatigue.
You can see a
summary and view our interview on the website.
We are
also gathering interest in forming 2 new patient and caregiver support meetings:
Charlotte, NC and Tampa FL.
If
you live in Charlotte, NC and are
interested, please complete the online survey to indicate your preferences
for days and times.
If
you live in Tampa, FL and are
interested, please complete the online survey to indicate your preferences
for days and times. We look forward to getting started.
In the
meantime….
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
Labels: Chronic lymphocytic leukemia, CLL, CLL Society Inc., CLL support group, Fatigue, Survey
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