Quarter 2 2018: Volume 4 Issue 2

Welcome to the Second 2018 Issue of The CLL Tribune

This is the first newsletter since my successful CAR T therapy. I received my genetically engineered T cells in Seattle on March 22.

They worked their magic and by the best measures that science can offer, there is no measurable cancer in my bone marrow, blood or lymph nodes. I have either pushed the CLL to levels that are so low it could take years to return if it ever does or down to where it is truly gone.

Only time will tell.

This miracle of modern medicine, this mix of mouse and human genetics, did come with significant costs: severe arthritis, horrific pain, functional paralysis, fevers, drenching night sweats, hemoglobin down to 7 grams, a blood clot in my lungs and mental fogginess.

But I am back. I am walking again. I am working again.

Please take a look at my blog: https://cllsociety.org/car-t-blog/ for the gruesome and awesome details.

The CLL Tribune is our place for the latest news from medical conferences, a chance to get answers to questions from our pharmacist or doctor, our Did You Know feature, articles on The Basics and Beyond the Basics about CLL, and most importantly, the stories of our fellow patients and caregivers. These are so valuable.

If you would like to know more about writing about your story, we can help. Reach out at support@cllsociety.org. You will be glad you did.

Thanks for reading. Stay strong, we are all in this together.

Brian Koffman, MD

Living Well With CLL

A Breakthrough in Cancer Treatment – A Patient’s Story

By Doug Olson – Patient

My name is Doug Olson and I am a CLL survivor with a rather unique story to tell. It is truly a privilege to have an opportunity to share my journey with CLL with all of you who visit this wonderful web site…Read more

Familial Chronic Lymphocytic Leukemia (CLL)

By Linda Lannom – Caregiver

A few months ago, someone in the DC-area support group asked whether or not CLL ran in families…Read more

Into the Abyss, A Veteran’s VA Journey

By Bruce Wright – Patient, Patient Advisor, Patient Educator 

My name is Bruce Wright and I am a Patient Advisor as well as Patient Educator for the CLL Society…Read more

Recent and Emerging Treatments for CLL

By Mark Hoffman – Patient

I am on a trial of Imbruvica and Venetoclax and doing well so far. I got to MRD negative (minimal residual disease) in my bone marrow after 15 months…Read more

The Long and Winding Road

By Debbie Minden – Patient

When I was diagnosed with CLL in 2004, a 52-year-old woman, I was told by several doctors that I had a “good cancer”…Read more

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Did You Know?

CLL Facts

By Brian Koffman, MD

More than four out of ten CLL patients feel they don’t get enough sleep. Fatigue is the most common symptom reported during watch and wait…Read more

The Basics

Watch and Wait

By Valerie Vickers – Patient

Each person blind-sided with a cancer diagnosis, including Chronic Lymphocytic Leukemia (CLL), has a story…Read more

Beyond The Basics

CLL Markers and What They Mean: A Patient Perspective – Part II – NOTCH1

By Wayne “WWW” Wells – patient

Admittedly this essay is a rabbit-hole in the exploration of CLL biology for which you might want to read in parts or when relevant questions arise on your own journey…Read more

Ask & Tell

Research

Check out our Posters presented at the American Society of Clinical Oncology and the European Hematology Association 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 Moffitt Cancer Center answers readers’ pharmacy questions submitted to the CLL Society…Read more

Conference Coverage

ASH 2017: Dr. Byrd on What We Don’t Know About CLL

By John Byrd, MD and Brian Koffman, MD

On the last day of ASH (American Society of Hematology) annual meeting in Atlanta in December, 2017, I sat down with my personal doctor at Ohio State…Read The Interview

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DISCLAIMER
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.