Welcome to the Third 2020 Issue of The CLL Society Tribune focused on MRD
This is the first of several single-issue Tribunes where we can dive deeper into evolving or important topics and recent research findings. Next quarter we will focus on CAR-T therapy, but in this season’s issue we focus our spotlight on MRD, also known as minimal or measurable residual disease. Over the next few years, the role of MRD testing in determining when certain CLL treatments might be safely stopped is expected to become more important. But that is true only in some circumstances and only with some therapies. Patients can prepare by becoming well-informed so as to know when to push for appropriate testing. Please complete our MRD and limited duration survey, and then please read all that we have prepared from patients and experts on this emerging topic, because Smart Patients Get Smart Care™.
Living Well With CLL
My MRD-Negative Journey Meant a New Beginning
By Keith Seagull – Patient
Keith Seagull’s touching memoir of his 16-year CLL survival revealing ardent faith, love of family, and astounding advances in CLL treatment options. … Read more
My Barely Detectable Thoughts on Being Minimal Residual Disease Undetectable
By Stephen Feldman – Patient
Read about Stephen’s experience of having achieved undetectable minimal residual disease status (U-MRD) … Read more
My MRD Journey
By Mark Hoffman – Patient
Watch Mark’s video in which he talks about his clinical trial experience, MRD testing, and how he achieved uMRD. … Read more
MRD Survey
2020 Patient Survey: MRD Testing and Limited Duration Therapy
CLL Society is asking for patient and caregiver participation in a survey which will help us learn about knowledge, attitudes, and preferences about MRD (measurable residual disease or minimal residual disease) and limited duration (also known as fixed duration) therapies. Our goal is to learn more about what our patients know and think so we can best serve you in the future. Please take a few minutes to complete this important survey. … Go to survey!
Subscribe to The CLL Tribune
Learn more about MRD and disease monitoring by visiting our webpage here.
NEW IN 2020!
Submit your stories and questions regarding CAR-T Therapy for our Q4 Special Edition Tribune to support@cllsociety.org!
CLL Tribune is looking for your contribution including articles, storytelling, poems, drawings, or other creative mediums. Please share!
Email support@cllsociety.org with your interest!
MRD Glossary
MRD Testing Glossary
The CLL Society worked with a broad coalition of other stakeholders in the MRD TESTING COLLABORATIVE to produce a glossary of terms for those new to MRD (minimal or measurable residual disease). … Read more
The Basics
Minimal Residual Disease Assessment in CLL: Ready for Use in Clinical Routine?
By Brian Koffman, MDCM
Dr. Koffman breaks down the key takeaways from a recent medical article that describes the MRD landscape. … Read more
Minimal Residual Disease Testing
Be MRD Aware Videos
Two videos featuring our own Dr. Koffman describing the importance of and access to MRD Testing. … Read more
Beyond The Basics
Dr. Susan Leclair on the Mathematics of MRD Testing and More
By Susan Leclair, PhD, CLS (NCA)
Read Dr. Leclair’s two articles that will give you the opportunity to gain helpful insights, not only into understanding your own CLL test results, but also to acquire a good grasp of the current data about COVID-19 results and any other testing data … Read more
Conference Coverage
ASH 2019: Dr. Tam Discusses Captivate Trial – Ibrutinib + Venetoclax in First-Line Treatment
By Thomas. E. Henry III, MBA, RPh, CPh
At ASH 2019 in Orlando, Dr. Brian Koffman interviewed Dr. Constantine Tam about the most recent results of the Captivate Trial – Ibrutinib + Venetoclax in First-Line Treatment. … Watch The Interview
Ask The Doctor: MRD Edition
MRD-specific questions submitted by readers
By Brian Koffman, MDCM (retired), MS, Ed
Dr. Brian Koffman, Chief Medical Officer of the CLL Society, answers readers’ questions submitted to the CLL Society…Read more
Ask The Lab Scientist: MRD Edition
MRD-specific questions submitted by readers
By Susan J. Leclair, PhD, CLS (NCA)
Susan J. Leclair from University of Massachusetts Dartmouth answers readers’ lab scientist questions submitted to the CLL Society…Read more
Ask The Experts
Questions submitted by readers and answered by our CLL Society experts.
Ask The Doctor
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
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
Ask The Lab Scientist
By Susan J. Leclair, PhD, CLS (NCA)
Susan J. Leclair from University of Massachusetts Dartmouth answers readers’ lab scientist questions submitted to the CLL Society…Read more
Ask the Hospice/Palliative Care Doctor
By Ed Ratner, MD
Dr. Ratner at the Minneapolis VA Medical Center answers readers’ hospice/palliative care questions submitted to the CLL Society…Read more
The CLL Society Tribune is made possible in part by grant support from AbbVie, Adaptive Biotechnologies, Astra Zeneca, and Genentech.
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.