Quarter 2 2016: Volume 2 Issue 2

Welcome to the Second 2016 Issue of The CLL Tribune

We are a data driven society and it is only with good data that we make progress.

That is particularly true when we are dealing with a largely incurable cancer, our CLL.

That’s why we at the CLL Society are so pro clinical trials- more information to help move us closer to a cure.

And that’s why we are generating our own data through surveys. We can use this information to influence decision makers about trial design, drug development and what matters to us patients.

And that’s why when I spoke at the European Hematology Association Congress in Copenhagen, more than a thousand hematologists packed the auditorium and spilt out into the halls to hear what you had to say in our surveys and afterwards, to push me for more data.

So thanks for all your help. We couldn’t do it without you. Please take a moment to complete our survey about CLL experts here.

As I have said many times, we are all this together.

This CLL Tribune is full of “expert” advice from both patients and doctors on the frontlines. We also introduce John Huber, our newest Board Member who retired from running the Aplastic Anemia and MDS International Foundation last summer and is now helping us here in many ways including with his article [provide link to article] on being a novice patient.

If you know of someone who could benefit from learning more about CLL, please invite them to visit cllsociety.org and sign up to receive the newsletter and email alerts. Feedback and suggestions for future newsletter topics are always welcome and can be emailed to contact@cllsociety.org. We hope you enjoy our June 2016 issue. Keep on the lookout for our next one in three months!

I hope you find much of interest and value.

Living Well With CLL

Why You Should See A CLL Specialist

By Terry Evans – Patient

Chronic Lymphocytic Leukemia (CLL) is a very unique type of cancer. It is usually slow to progress, it sometimes has no initial symptoms…Read more

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

By Pat Santanello – Patient

CLL was never on my radar. In December of 2007 I was already a veteran of a brain tumor (benign), spinal cord tumors…Read more

How My Support Group Saved My Life!

By Cookie Harris – Patient

Thursday April 9, 2014, started as all my days do…caring for my adult disabled son. After dropping Channer off at his Day Program…Read more

On Being a “Novice” Patient

By John Huber, MS – CLL Society Board Member

Throughout our lives, particularly at different stages in our lives, we find ourselves in new situations. Some we choose…Read more

May I Remember Never To Forget

By Mark Silverstein – Patient

When was the last time, if ever, that someone healthy (besides perhaps, and only just perhaps, the people closest to you) asked you…Read more

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Did You Know?

CLL Facts

By Brian Koffman, MD

CLL may be the most common blood cancer in adults but is still quite rare and considered an orphan disease. There are about 16,000 new cases…Read more

The Basics

What is Bone Marrow?

By Brian Koffman, MD

Bone marrow is where we make nearly all of our blood, so it is obviously vitally important. It has been estimated that the bone marrow makes…Read more

Beyond The Basics

What is the TAPUR Trial?

By Ryan Jacobs, MD

The Targeted Agent and Profiling Utilization Registry (TAPUR) Study is a non-randomized clinical trial that aims to describe the safety…Read more

Ask & Tell

View Reader Poll Results & Submit Questions

View the results of the reader poll from our last issue, submit a question you’d like addressed in future newsletters and participate in another brief reader poll… Read more

Ask The Doctor

Questions submitted by readers and answered by the CLL Society Medical Advisory Board

By Richard Furman, MD

Dr. Richard Furman of Weill-Cornell Medical College answers readers’ questions submitted to the Q1 2016 issue of The CLL TribuneRead more

Conference Coverage

An Interview from the 2016 EHA Meeting with Dr. Jeffrey Jones on the Role of Venetoclax in CLL

By Brian Koffman, MD and Jeffrey Jones, MD, MPH

In the first half of our video interview from the 2016 European Hematology Association meeting held in Copenhagen, Denmark in June…Read The Interview

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The CLL Society does not provide medical advice or endorsements. Unless explicitly stated otherwise, all content in the CLL Tribune is the opinion or information of its author, not the CLL Society. This newsletter is for reference and educational purposes only and is not a substitute for medical advice. We do not guarantee the accuracy of any of the materials. Always contact your own doctor or other professional healthcare provider if you have any questions concerning your or your family’s health. Everyone’s circumstances are different.