I thought I sneak in one last post from LAX before I board my plane to Wroclaw, Poland via Munich.
It is mostly about the new posts on the CLL Society's website
and our nonprofit's news, but I wanted to share that my latest lab results from my visit to the infusion center for IVIG remains most boring with a low normal hemoglobin, a high normal platelet count and an absolute lymphocyte count of 1.2. YEAH! Of course that really matters is the count of clonal B cells and that takes flow cytometry, but at least I know that nothing major is happening. Slow and steady makes me happy.
This week on the CLL Society
we bring the second part of our interview with Professor Michael
Hallek of Koln, Germany, the director of the German CLL Study Group and a major
CLL researcher and thinker.
He starts by discussing his “fast boat” adaptive trial
strategy (similar in many ways to that of Prof. Hillmen in the UK), essentially
looking for the most tailored therapy based on not just predictive factors, but
also on how we patients actually respond in trials. He is looking for what I
call that perfect Goldilocks’ mix of “ as much as necessary, as little as
In the second half of the interview, he makes a cogent
argument for the ongoing use of FCR frontline in select patients. While many of
us are not fans of chemo-immunotherapy (CIT), Professor Hallek has strong data
to support his perspective. Listen with an open mind.
We also share my comments and background on an important
oral abstract presented at
the 20th Congress of the European
Hematology Association (EHA), June 11-15, 2015 on venetoclax (ABT-199 or
GDC-199) and rituximab. In relapsed patients, the total response rate, the
complete response rate, the MRD- rate and the ability for some to be able to
remain disease free after stopping the drug is important data that you can find
here in our 2015 conference
We have a significant backlog of important educational
material mostly from large conferences such as ASH 2014 and others from 2015
that we plan to post over the next few months.
In a first step to speed up the process, our first high
school intern volunteer, the granddaughter of the CLL Society's attorney, has joined us online to help her earn her community
service hours by helping us catalog all the videos that we have produced and
are storing on the web.
We are working hard to expand what we offer to the tens of
thousands of online readers and to actuate our ambitious plans for
patient-centric, physician-curated live education and support. One volunteer medical
director (yours truly), his unpaid wife and one part-time RN can’t do it all, although
I have to say we have made some amazing progress in our mission to meet the
unmet needs of the CLL community in the less than 90 days since our nonprofit’s
website launched. Our website is #1 in organic Google searches for CLL Society
despite having no search engine optimization in place. We are too busy trying
to get our content up.
There is so much more we must do. Your suggestions, help,
support, donations, ideas, and feedback are what guide us and keep us going.
We remain forever committed to open content for all with no
need to sign in or share any of your personal information to see a video or to get
the help you need. If you haven’t done so already, we encourage you to please sign up
to receive alerts
regarding new postings and for our quarterly newsletters (first one will be
published in September) and to share with other patients, caregivers or
concerned family or anyone whose life is touched by CLL.
The CLL Society will be at iwCLL in Australia in September to cover the news and we are planning an amazing patient meeting the day before the researchers' meeting in Sydney with Lymphoma Australia.
We are all in this together.
Volunteer Medical Director, CLL Society
Labels: ABT-199, chemotherapy, Chronic lymphocytic leukemia, Clinical trials, CLL, FCR, GDC-199, interviews, iwCLL 2015, lab results, Professor Hallek, venetoclax