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 firstname.lastname@example.org. You will be glad you did.
Thanks for reading. Stay strong, we are all in this together.
Brian Koffman, MD
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
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
By Richard Furman, MD
Dr. Richard Furman of Weill-Cornell Medical College answers readers’ questions submitted to the CLL Society…Read more
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
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
We’d like to thank the supporters of The CLL Tribune:
- Genentech/Biogen Idec
- Sunesis Pharmaceuticals
- TG Therapeutics
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.