CLL Society Newsletter with Dr. Jones on venetoclax, Dr. Jacobs on the TAPUR trial, a survey in what makes an expert, and great articles by patients and caregivers

I am happy to share that the Q2 2016 issue of The CLL Tribune has launched! You can read it here: http://www.cllsociety.org/newsletter/

It is much hard work and we are very grateful to all the patients and caregivers and doctors who contributed to it. 

Please take a read (lots of good stuff) and also give us your opinion on what makes a CLL specialist from your perspective.

The content includes:

·      Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage

·      Read answers to reader questions by Dr. Rick Furman in Ask the Doctor

·      Learn about what bone marrow does in The Basics Section 

·      In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies

·      Learn new facts about CLL in the Did You Know section

·      View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section

·      In Living Well with CLL, you can read about:

o   Why You Should See a CLL Specialist

o   How my Support Group Saved my Life

o   I Don’t Have CLL. Yes, I Do. Now, I Don’t.

o   On Being a Novice Patient

o   May I Remember Never To Forget

Happy reading!

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

6/30/16

http://cllsociety.org

Dr. Jeff Sharman on some interesting clinical trials for CLL, an important Canadian survey, and much more

This week in the Clinical Trials/The Basics section of the CLL Society website, we’ve posted an interview with Dr. Jeff Sharman where we talked about how clinical trials are developing. We also reviewed some very important things that patients should know and do regardless of whether they are being treated within a trial.
You can read a summary of our discussion and watch my interview with Dr. Sharman here. http://cllsociety.org/2016/06/dr-jeffrey-sharman-best-practices-new-cll-trials/
For Patients Who Have Been Treated with Venetoclax: Lymphoma Canada is preparing a submission for the pan ­Canadian Oncology Drug Review (pCODR) for Venetoclax for the treatment of patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) who have received at least one prior therapy; this includes patients with 17p deletion.You can help by completing their survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.You do not need to live in Canada to complete this survey. You can access the survey here. https://www.surveymonkey.com/r/PSPKRHK Consider taking the time to help out your fellow CLL patients in Canada. Thanks.
NEXT WEEK: We will be publishing the next issue of The CLL Tribune. You can look forward to:
· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage
· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
· Learn about what bone marrow does in The Basics Section
· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies
· Learn new facts about CLL in the Did You Know section
· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section
In Living Well with CLL, you can read about:
o  WhyYou Should See a CLL Specialist
o  How my Support Group Saved my Life
o  I Don’t Have CLL. Yes, I Do. Now, I Don’t.
o  On Being a Novice Patient
o  May I Remember Never To Forget
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org

Dr, Bill Wierda on the Importance of Clinical Trials in CLL

I’m home from the European Hematology Association Congress in Copenhagen. 

I received very positive feedback on my lecture and the preliminary data from our Reader Poll with many requests for more information. We plan to follow up with another survey, Seems the 1000 plus hematologists to whom I presented the data and the folks from industry really want to know what we patients think and want.

I attended several lectures on CLL, reviewed dozens of abstracts, and had some great interviews with world experts that I look forward to sharing with you in the near future. 

After the last long day, I finally got out of the convention center long enough to walk along the harbor and see the famous The Little Mermaid statue.

This week in the Clinical Trials/The Basics section of our website we’ve posted an interview with Dr. Bill Wierda of MDACC where we talked about the value of clinical trials and how he approaches the discussion with patients about joining a clinical trial. You can read a summary of our discussion and watch my interview with Dr. Wierda here. http://cllsociety.org/2016/06/dr-william-wierda-clinical-trials-cll-chronic-lymphocytic-leukemia/

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

Interview with Dr. Kipps on CLL(chronic lymphocytic leukemia) research from ASH 2015

Well, my bags are finally packed. Better be! I am at the airport ready to go to the European Hematology Association meeting in Copenhagen. 

Before the meeting starts on Thursday, I’ll be presenting some preliminary data from our Reader Poll at a symposium on Wednesday and attending a couple of other meetings with global Lymphoma groups. I have numerous other meetings and interviews set up and I’m hoping to get a little bit of time outside the convention center to at least see The Little Mermaid statue.

This week in the Conference Coverage section of the CLL Society website, we’ve posted a rambling interview with Dr. Thomas Kipps from ASH 2015. We discussed the latest data in the fight to defeat CLL using signal blockers, Venetoclax, ROR1 antibodies as well as the importance of more research. You can read a summary of our discussion and watch my interview with Dr. Kipps here. http://cllsociety.org/2016/06/dr-kipps-signal-blockers-venetoclax-ror1-antibodies-importance-research/  ‎

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 16^th 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. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9384957 

There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org