Quarter 1 2018: Volume 4 Issue 1

Welcome to the First 2018 Issue of The CLL Tribune

It’s hard to believe that we are entering the fourth year of our newsletters. Thank you for your ongoing support and your readership. We can’t do it without you.

In the first quarter of 2018, we don’t anticipate any slowdown in the amazing pace of CLL research or in our eagerness to share and explain what it all means to chronic lymphocytic leukemia patients and their caregivers.

In this issue, our pharmacist shares his counsel on how to take idelalisib, an important drug in CLL, but one with potential issues. We have articles on ZAP70 from Wayne Wells and from ASH 2017, Dr. Mato discusses PET scans and Richter’s.

Our Living Well with CLL section has five patients sharing their unique journeys. And as always, we’ve included our popular Ask the Doctor, Ask the Pharmacist, Did You Know and Ask & Tell sections.

I am writing this Tribune introduction from the infusion center at the Seattle Cancer Care Alliance (SCCA) where I am now getting chemotherapy – fludarabine and cyclophosphamide- to knock back my own T-cells and allow space for my genetically reengineered CAR-T cells to work their magic. By the time you read this I will have received my CAR-Ts and they should be working hard to clean out all the chronic lymphocytic leukemia cells from my blood, bone marrow and nodes.

At the CLL Society, we know that we learn from each other’s experiences, so please share your story or a lesson learned and write about it for us. You will be glad you did and others will benefit, too. Reach out to us at support@CLLSociety.org because we need your help and we are all in this together.

Stay strong,


Living Well With CLL

“The Good Cancer”

By Fred Shulman – Patient

Hello Brothers and Sisters. My name is Dr. Fred Shulman and like you, I have CLL, the “GOOD CANCER”…Read more

Life with CLL from My Perspective as a Nurse

By Pamela Peterson – Patient

Brian Koffman suggested that I write about my CLL experience from my perspective as a nurse…Read more

It Takes a Village to Turn a Victim into a Survivor

 By Larry Marion – Patient

A few days before Thanksgiving in 2005 I was diagnosed with chronic lymphocytic leukemia…Read more

CLL and a Journey of Faith

By Steve Starr – Patient

CLL Friends, first the encouraging news for all of us– long remission is possible. I was in remission for 14 years until my CLL gradually crept back in 2015…Read more

A Personal Story about Living with CLL – 16 years & Counting

by Bob Levis – Patient

During 1999, I moved to Singapore with my wife and high school-aged son for what would become an eight-year overseas business assignment…Read more

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Did You Know?

CLL Facts

By Brian Koffman, MD

CLL/SLL is both a leukemia and lymphoma. It is a leukemia because it is found in the blood and a lymphoma because it originates the lymphoid cells…Read more

The Basics

Things to Know About Idelalisib

By Tom Henry – CLL Patient and Pharmacist

Idelalisib (eye-del-a-lis-ib), which is marketed under the tradename of Zydelig® in the United States and Canada, is a selective inhibitor of the lipid kinase PI3Kδ…..Read more

Beyond The Basics

CLL Markers and What They Mean – A Patient Perspective – Part I – ZAP-70

By Wayne “WWW” Wells – patient

Most patients with CLL/SLL who have been around for awhile will become aware of the ZAP–70 marker related to prognosis…Read more

Ask & Tell


Please tell us about your interest and access to printed materials when you visit your healthcare provider and view the results from our last 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 CLL Society…Read more

Ask The Pharmacist

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

By Thomas E Henry III, MBA, RPh, CPh

Thomas E Henry III, MBA, RPh, CPh from Burlington Consulting Associates answers readers’ pharmacy questions submitted to the CLL Society…Read more

Conference Coverage

ASH 2017: Dr. Mato on PET Scans Identifying Richter’s Transformation in CLL (chronic lymphocytic leukemia)

By Brian Koffman, MD and Anthony Mato, MD

As we are getting better at controlling CLL and living longer, there is increasing concern about serious late complications including Richter’s Transformation (RT) or Richter’s Syndrome (RS) where the CLL “transforms” into a new more aggressive type of lymphoma…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.