Personal Update and Dr. Byrd on What We Don't ... - CLL Support

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Personal Update and Dr. Byrd on What We Don't Know

bkoffman
bkoffmanCLL CURE Hero

Hi,

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.

Stay strong.

We are all in this together.

Brian

cllsociety.org

21 Replies

Well done Brian you are an inspiration!

Wishing you well in your complete recovery!

Geoff

bkoffman
bkoffmanCLL CURE Hero in reply to Cammie

Thanks

Newdawn
NewdawnAdministrator

‘I am expecting a long and deep remission. Odds are in my favor.’

Just the sweetest words we can ever utter and may they always be true for you Brian.

Newdawn

Brian, keep STAYING STRONG!! J.R.

Congrats Brian, I wonder any concerns bout going back to work with low IGs? Sometimes I consider jobs, but don't know if I should be exposed to germs even tho I'm getting IVIG.

john

bkoffman
bkoffmanCLL CURE Hero in reply to johnl

Some concerns, but minor. I don't see kids and I wear a N95 mask with anyone who is sick.

All sounding good Brian. Happy to hear this. Don’t overdo it.

Peggy 😀

So good to see you posting again and to read how well you are doing!

BTW, the video with you and Deb Sims was posted recently. Have to say, you're looking awfully good, Dr. Koffman!!!

bkoffman
bkoffmanCLL CURE Hero in reply to Mystic75

Aw shuck. Thanks.

Hello Doc. Koffman glad to see your post!

That's quite a post, thank you and good luck for your future x

JigFettler
JigFettlerVolunteer

Thank you for your post.

Your post is an inspiration for all of us. Thank you for sharing your journey, your insights, and all your experiences. I can always count on learning much more about CLL from you and all you post.

May your remission be long and may you enjoy being back to work.

Sally

So pleased for you Brian.

Sue

Very happy to read the good news from you!

Have followed your journey and I am so happy to see you back "fighting the good fight!" Thanks for keeping us all informed, and best wishes for a deep and lasting remission...

I have found oncologists too proud of themselves to sit in one room with patients on a educational session. Your virtual session could be a new beginning...

bkoffman
bkoffmanCLL CURE Hero in reply to Mansy

Here's hoping. It's a virtual room, but it's a start.

Things that you post help me to get through the day and look long into the future. Thanks

bkoffman
bkoffmanCLL CURE Hero in reply to Dom57

Thanks. Makes it all worthwhile. Stay strong.

Hope your remission is a forever one. Prayers for you going forward.

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