Been busy and tired, trying to get ahead of what I need to do while spending many hours at the hospital at the Seattle Cancer Care Alliance (SCCA).
Writing this with fludarabine and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22.
I have tried to keep the CLL Society website up to date with weekly reports from ASH. Last week it was an interview with Dr. Con Tam (cllsociety.org/2018/03/ash-... on BGB-3111 or zanubrutinib (yet another name we have to learn), a more focused BTK inhibitor similar in some ways to acalabrutinib.
I have also been blogging on my personal CAR-T journey (cllsociety.org/car-t-blog/). So far so good, nothing too difficult other than some mild GI issues, but the real fun begins when the CAR-T cells start expanding after may infusion
Dr. Hoffman, we are all indebted to you for your faithfulness in taking your treatment public, for your continued communications that give us the information we need to see that the fight to find what can be the treatment of all treatments for CLL.
Since we have learned as we go that this leukemia is not the same in any of us, there may need to be several curing treatments developed to fit the variables.
Thank you, and may this treatment be the one for you.
Risking a trial with Ibrutinib gave you time for researchers to develop this trial. I so hope this is the one for you, Chris M., Debbie, and everyone else I don't know in there with the three of you! Sending lots of positive thoughts to you from sunny / rainy Southern California!
Desde Argentina le envio mis mas sinceros deseos de suerte y excelente recuperacion. Gracias por compartir su experiencia. Admiro su fortaleza y generosidad.
We are rooting for you every step of the way. Thank you for all you have done, especially in the way you have done it.
Our human limitations provides each of us many challenges, whether it is dealing with CLL or any number of issues we deal with in our lives, yet you have the ability to envelope this with a human spirit full of grace and gratitude, which is so inspiring.
We haven't the pleasure. But wanted to thank you for sharing your journey. My thoughts and prayers for a successful outcome. God bless. Cindi from Pennsylvania US.
Dr. Koffman, from the day after I was diagnosed not long ago, I began to read each of your posts. I have been informed, encouraged, and inspired by each of them, and I thank you.
I want to join everyone in letting you know how much I too am rooting for you, I wish you wonderful success with this treatment.
Hello Dr Koffman....hope the CAR-T works for you. I just got through reading what it is, how it works and side effects the latter of which can be mild to life threatening and death...all kind of scary so when I say my prayers every night I'll say a special prayer for you....curious as to what your markers/ mutations are which you can private message me if you care to share. Also does one have to fail all other treatment modalities before going the CAR-T route?
No words can really explain how much of your posts, and what you do mean to all of us going on this CLL journey. We all wish you the best & great outcome.
I am a newbie to this forum, but reading all of the posts sent back to you tell me you are an extraordinary human being. I will pray for your successful treatment.
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