I have been negligent in posting but I have an excuse or actually several.
Been working hard to get back to my baseline with my knee arthritis and pain through swimming and physical therapy.
Still anemic and tired, but getting better.
The trip to Stockholm for EHA to present our research didn’t help with my fatigue, but it was so worth it. More on that later- Thanks to the 1000+ patients who participated in our survey. Our data is already being referenced by other researchers! We are making a significant difference in how patients are treated.
My latest personal news is that on DAY 28 post CAR T, by deep sequencing I had no CLL in my marrow. On DAY 74, I had minimal, but visible T cell persistence by flow and qPCR, so the CARs are still around doing their magic. 1 CAR can kill a 100,000 cancer cells- serially killers
My ALC is 0.6, likely all T cells. As expected IGA and IGM are very low.
I am expecting a long and deep remission. Odds are in my favor.
The nonprofit CLL Society has also kept me pretty crazy busy. ASCO and EHA are behind, but now we are trying to get more of our research presented at the next ASH and then published. ASCO did an article on us.
Our program that provides free Expert Access to CLL experts that otherwise would not have such access is very popular and busy.
We just put up our quarterly newsletter cllsociety.org/quarter-2-20... chock full of amazing articles written by fellow patients and caregivers, Dr. Byrd’s insights into what we don’t know about CLL from ASH 2017, articles on watch and wait, and on NOTCH1, Dr. Furman’s and Tom Henry’s responses to your questions for the doctor and the pharmacist, and much more.
We are always looking for those who want to share their story. Reach out please to me. We need writers and we can help.
I will be doing several innovative educational programs for both doctors and patients. I am very keen on getting doctors and patients in the same room even if it’s a virtual room- I’ll let you know the dates and places soon.
We update the website at least weekly with new content, usually an interview with a CLL guru or a review of new data. As always, all our content is free, but it does help us if you sign on for our newsletter at cllsociety.org/newsletter-s...
It’s all a lot of work, but good work.
And I am going to the office as a family doctor in 2 weeks. Love the work and it is my only paid gig. I will be busy there too as we are very short of providers.
We are all in this together.