Quarter 2 2017: Volume 3 Issue 2

Welcome to the Second 2017 Issue of The CLL Tribune

We’re all in this together—patients, caregivers, family and friends, as well as doctors, nurses, and scientists. We learn from each other—be it the telling of one patient’s own unique CLL journey, or reading and analyzing the data from a clinical trial. It’s all important information. It helps us live a better today and gives us hope for tomorrow. Hope for better treatments. Hope for a cure.

As important as all this information is, each story, video, and article had to start with a question. How will I respond to this treatment? What does this lab report mean? How long will this new drug work on the majority of CLL patients?

That’s why we at the CLL Society ask questions. How can we serve you better? What do you need to know from a CLL specialist? What new promising treatments are on the horizon? We ask the questions so we can serve you better.

In that light, if you are a caregiver, please take a few minutes to participate in our Ask & Tell Reader Poll that focuses on the role of the caregiver, their support system, and how the CLL Society can further assist them.

Be sure to check out The Basics section that discusses immunizations and health screening recommended for CLL patients. In Beyond the Basics, learn how to understand and gain the most benefit from ClinicalTrials.gov. In Conference Coverage, read Dr. Brian Koffman’s interview with Dr. George Follows on Late Resistance to Ibrutinib in CLL. And, don’t forget to read stories from CLL patients in Living Well with CLL.

And, finally, read answers to questions submitted by Readers in Ask The Doctor. It can help you. It can help others too. Because we’re all in this together.

Living Well With CLL

Finding the Right Treatment for CLL Takes a Lot of Study, Timing and Some Luck!! (A cautionary account of a tricky year…)

 By Mark Hoffman – Patient

This is the story of how I got to the treatment that was most likely by far the best for my genetics…Read more

10 Months on Ibrutinib – the Odyssey Continues.

By Bob Barton – Patient

To recap, I started taking Ibrutinib on July 16, 2016 when my CLL had finally taken its toll on my body and my blood counts were very far from normal…Read more

I Thought I was Pre-Disastered

By Stephen Feldman – Patient

I was diagnosed with CLL in the spring of 2014. My relationship to my CLL, however, dates back over 30 years when, at the age of 23, I sustained a spinal cord injury…Read more

My Eight Year Journey with Chronic Lymphocytic Leukemia – Part One… Treatments

By Patti Jones – Patient

Throughout my life I have always been a very healthy woman, very seldom going to a doctor for even a routine checkup. My mom, dad and grandparents all lived into their eighties…Read more

The Role of the Pharmacist in CLL

By Tom Henry – Patient

When most of us think of a pharmacist we think of them primarily in the role of retail pharmacy, the health care professional with whom many of us interact most frequently…Read more

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Did You Know?

CLL Facts

By Brian Koffman, MD

The number of CLL patients diagnosed in China has been on a dramatic rise. One abstract at the recent iwCLL 2017 conference in New York asked: Is there an epidemic of CLL in China?…Read more

The Basics

CLL: Infection Kills! How Can We Prevent It?

By Deborah M. Stephens, DO

I have got tons of extra white blood cells. That helps me to fight infection, right? Wrong…Read more

Beyond The Basics

How to Understand and Get the Most Out of ClinicalTrials.gov

Clinicaltrials.gov is a US-based website that requires companies and investigators to post information about clinical trials in a public forum…Read more

Ask & Tell

Access The CLL Tribune Q2 2017 Reader Poll

The CLL Society is very aware of the importance of CLL caregivers. With that in mind, our Reader Poll is focused on the caregiver… 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 2017 issue of The CLL Tribune…Read more

Conference Coverage

ASH 2016: An Interview with Dr. George Follows on Late Resistance to Ibrutinib in CLL

By Brian Koffman, MD and George Follows, PhD, FRCP, FRCPath

At ASH 2016 Dr. George Follows of Cambridge, England discusses our evolving understanding of life after ibrutinib for those of us with CLL…Read The Interview

We’d like to thank the supporters of The CLL Tribune:

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.