Quarter 4 2016: Volume 2 Issue 4

Welcome to the Fourth 2016 Issue of The CLL Tribune

As we close out another holiday season, we reflect upon the good times with family and friends, and remember all that has been accomplished in the world of CLL in 2016.

The CLL Society continued to provide education and resources to fill the unmet needs of CLL patients and caregivers, as well as those with related blood cancers. The Society also started a number of in-person patient support groups around the country where patients help patients understand their CLL and cope with a cancer diagnosis. And, most importantly in 2016, the dedicated researchers, clinicians, and scientists brought us new therapies in clinical trials and FDA-approved novel biologics for both first line treatment as well as hard-to-treat relapsed and refractory patients. The CLL Society helps explain the breakthroughs and helps in understanding our best choices, be it an approved therapy or a clinical trial.

It’s been hard work and a tireless fight by the researchers. But, even these dedicated professionals took time out of a few workdays to celebrate the holiday season. The National Institutes of Health made special gingerbread houses to not only educate and inspire, but also to have a little fun.

Now we look forward to the promise of more and better treatments to come in 2017. As CLL patients, we must stay vigilant, educated, and strong. And, with more people being diagnosed with CLL every day, we must continue to help them along their CLL journey.

Thousands of CLL patients are smarter because of you, and getting smarter care.

Together, let’s keep them learning in 2017. Please consider a tax-deductible donation to the CLL Society today. After all, we’re all in this together. Thank you.

Living Well With CLL

Ibrutinib for Watch and Wait? My Story

By Meldon Kahan – Patient

I was diagnosed with CLL in July 2013. I had a blood test for a sore throat. The lymphocyte count was only 5 – borderline – but it was a shock…Read more

Watch and Wait: Professor Chris Fegan from Wales “GETS” CLL

By Brian Koffman, MD and Chris Fegan, MB, MD, FRCP, FRCPath

Dr. Fegan and I met at a CLL-AN (CLL Advocacy Network) Horizon Forum in Belgrade, Serbia in November 2016 where we discussed the stress of being diagnosed with leukemia…Read more

What to Do While You Watch and Wait: A Patient’s Perspective

By Mark Hoffman – Patient

Mark, a fellow CLL patient shares how he manages watch and wait and what works for him. His story is meant as an example and not a recommendation…Read more

What You Should Know as a CLL Caregiver

By Howard Massey – Caregiver

In March of 2006, my wife Barbara received a phone call telling her that she had been diagnosed with a disease that neither of us had ever heard of …Read more

You Never Know: Twenty Years since Stage IV and Counting

By Dennis Fried – Patient

Although it’s not the usual way of doing things, I’ll come to the moral of the story first: You never know…Read more

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Did You Know?

CLL Facts

By Brian Koffman, MD

Ibrutinib likely works by blocking BTK or Bruton’s Tyrosine Kinase in the cancer cells. The minimum dose needed to inhibit BTK is 2.5 mg/kg/day…Read more

The Basics

Autoimmune Problems in CLL (chronic lymphocytic leukemia)

By Brian Koffman, MD

We all understand that CLL is a disease of the immune system, but we need to keep in mind that its dysfunction can be manifested…Read more

Beyond The Basics

Richter Syndrome

By Adrian Wiestner, MD, PhD

In 1928, Dr. Richter described a patient with chronic lymphocytic leukemia (CLL), who progressed to develop an aggressive large cell lymphoma…Read more

Ask & Tell

View Reader Poll Results & Submit Questions

View the CLL Society ASH Poster, 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 Q3 2016 issue of The CLL Tribune…Read more

Conference Coverage

ASH 2016: An Interview with Dr. John Pagel on Maintenance Therapy in CLL

By Brian Koffman, MD and John Pagel, MD, PhD

At ASH 2016 in San Diego, much of the chronic lymphocytic leukemia (CLL) buzz was about the new data on the durability of the responses to ibrutinib…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.