Newsletter and Our Survey on What Patients Want was Accepted or Publication at ASH 2016


Last week we published the latest issue of The CLL Tribune. We’re so grateful to the patients, and physicians and others who share their experience and expertise to enrich our CLL Society community. If you would like to share your story, or have ideas for future articles, please reach out to us.

We’d like to call your attention to a music video that Derek Caine has composed to honor and call attention to the importance of our CLL caregivers. You can check that out on our home page.

This week we would again like to highlight the content from our quarterly newsletter and also request that you take 2 minutes to answer our latest Reader Poll to give us feedback about how we’re doing and what topics you would like to see covered in the future. You can access it on the website

Did you participate in the Q1 2016 Reader Poll in The CLL Tribune? That poll focused on the factors that influence you when making decisions about your treatment for CLL. We felt that data was so important that we submitted an abstract for consideration to the American Society of Hematology. On Thursday, we heard that our abstract was accepted. While that is really exciting for us, what’s even more exciting is that the largest global hematology society felt it was important to hear the patient voice. This data is embargoed until after the meeting in December, but we will be sharing it after that. THANK YOU FOR PARTICIPATING! Your voice is important.

Please enjoy the articles and interviews from the Q3 2016 issue of The CLL Tribune:

Please enjoy the articles and interviews from the Q3 2016 issue of The CLL Tribune:

· Reading/viewing an interview with Dr. John Pagel about the CLL Education session at ASCO 2016 in Conference Coverage

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

· Learn about bone marrow biopsies by Dr. Bill Wierda and read a patient-friendly explanation of the report in The Basics Section

· In Beyond the Basics, learn more about the FISH test, what the results mean and how physicians use it to make treatment recommendations

· 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 feedback about the CLL Society and topics you think should be added to the website in our Ask & Tell section

In Living Well with CLL, you can read about:

o Reflections on Risking a Safari in Kenya and Tips for Safe Travel to Exotic Places when Fighting CLL

o Standing Up For Your Health

o My Treatment-Naïve Ibrutinib Journey – The First 30 days

o Could a CLL Clinical Trial Save My Life? What Were the Risks?

o Connect in Person: Join A Local CLL Support Group!

I’ll be in Park Ridge NJ this Thursday and near SFO on Oct 29 speaking about support groups, so please come by and say hello. Details are are on our website. Also many other CLL related events are mentioned with links.

In the meantime…. Stay strong.

We are all in this together.

Brian Koffman, MD


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