Dr. Mato on what really happens when we must stop our ibrutinib or idelalisib

[bkoffman]

Friends,

I hope my US-based readers had a happy healthy holiday weekend. This past weekend, in addition to recovering from my Paris jetlag, I have been reading abstracts in preparation to travel to the European Hematology Association meeting next Monday in Copenhagen. The meeting doesn’t start until Thursday, but I’ll be presenting some preliminary data from our Reader Poll at a symposium on Wednesday. Thanks again to those participants for taking the time to participate.

This week in the Conference Coverage section of the CLL Society website, we’ve posted an interview from ASH 2015 with Dr. Anthony Mato out of the University of Pennsylvania. He, along with 9 other institutions gathered data about their patients who discontinued either ibrutinib or idelalisib. You can read about the study and watch my interview with Dr. Mato here. [ cllsociety.org/2016/05/ash-... ]

I also wrote a brief blog post bkoffman.blogspot.com on what stops us from getting our best personalized care and how our little nonprofit is trying to help.

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL. In June, they include:

June 16th at 6 PM in Salt Lake City, UT: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. There is no charge to attend. [ lymphoma.org/site/pp.asp?c=... ]

I off to EHA in Copenhagen next week- meeting with fellow advocates from Europe and trying to represent the patients' perspective with your help on the surveys.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

5/31/16

[LynnB1947]

Thanks for sharing Dr. Koffman. As I have been on ibrutinib now for 25 months, I am very interested in following future options. Side-effects on ibrutinib for me have been the usual annoyances & nothing major. Your posts have great interest to the CLL/SLL community because as you say, "we're all in this together."

Lynn

[bkoffman CLL CURE Hero in reply to LynnB1947]

Thanks. New therapies are coming, but they are not perfect.

[Justasheet1 in reply to bkoffman]

Doc,

What is perfect. Are you optimistic or is this an off year?

Jeff

[bkoffman CLL CURE Hero]

Nothing perfect coming, but therapies keep getting better.

[Justasheet1 in reply to bkoffman]

Doc,

As you say,"stuck on third base".

Jeff

[bkoffman CLL CURE Hero]

And sometime the next 3 batters at the plate strike out.

[Justasheet1]

Doc,

Let's hope it's early enough in the season. You never know when that hitting streak will begin.

Jeff