I’ve been cleared to leave the hospital tomorrow. I’m still doing great, having no side effects from the treatment. Those may arrive in the next week or so as the number of modified CAR-T cells in my bloodstream increases. If the side effects are bad enough, I might have to return to the hospital, but I’m not expecting that will happen.
So I get to return to: delicious Suzie-made food, walks in the fresh air and sunshine, nights with uninterrupted sleep, normal showers with full flow, freedom from being tethered to the infusion machine. Autonomy!
The nurses and staff here at the Stanford Hospital have been so wonderful — professional and kind — that I may have to take Stanford off of my always-root-against college sports list. (Although I need to give that more thought, I wouldn’t want to make any rash decision. Roll on you Bears….)
We have to stay in Palo Alto for another 20 days in case any bad symptoms arise. I also have 8 follow-up appointments scheduled during that time, which will be a 15-minute drive from our Palo Alto apartment rather than a 1.5 to 2 hour drive from Kensington.
I got one small data point today indicating that the treatment is probably working. The blood marker for the level of myeloma in my system was at 87 two weeks before I got the treatment. (Normal range is 3 – 20.) A test for that marker taken just 48 hours after I got the experimental infusion returned a reading of 81. Not a big change, but going in the right direction. It shows that the treatment’s conversion of T-cells into cancer-killing CAR-T cells had already begun, and that those CAR-T cells had already started their killing spree. As more and more are converted, I fully expect the marker’s level to go down more quickly.
Amazing, amazing stuff.
One thing I didn’t fully understand before I started the trial was that the results of all of the many, many blood tests taken by Stanford on behalf of the trial’s sponsor are confidential, even from me. I understand why the sponsor would want that, although I assume that at some point they’d need to release that data (de-identified, so no one would know which subject which data came from), either in connection with its release of the Phase 1 study results, or as part of an application to move on to next phase of obtaining FDA approval for the treatment. Still, I wish I could see the, not because I want to release it to the sponsor’s competitors, but just to see what the effects of the treatment on me were over time. I’m a curious guy.
Finally, thanks to everyone for your concern and your messages of support and encouragement. They meant a lot to me and Suzie, and helped us keep our spirits up.
Stay tuned for further reports.
Categories: Blogging
I’m just getting caught up on your posts. I’m so glad you are headed home and treatment is going in a positive direction. I will keep you in my heart.
Bernard et moi sont très heureux de savoir que ton traitement a des effets bénéfiques et te permet de retrouver un mode de vie harmonieux
Tu as été très courageux et patient et Suzie toujours aussi solide
Vous êtes un couple exceptionnel !
Nous vous embrassons
So happy for you, Steve! This all sounds so encouraging.
Excellent news! I’m so happy to hear you are doing well and get to leave the hospital soon!
Dear Steve,
This is great news, I have so much joy in hearing it.
Continuing prayers blessings and
Love 💕 to you and Susie too
es
I’m so happy to hear things are going well, Steve, and thank you so much for keeping us posted.
Very happy for both of you. You are correct this is another step in the right direction. It is indeed amazing science. They are lucky that you accepted and I am sure you and Suzie are grateful your physicians introduced you to this trial. I am also surprised that you can’t see your own blood test status. Eventually though, you will. It’s good to be reassured that it’s working. We are all keeping our fingers crossed, for you of course but also for all the patients who may benefit in the future. You are generous to accept the rigor of a phase 1 study. Continued luck Steve. Best Suzanne
Thanks for the update, Steve! So glad you are making such great progress. Roll on you Bears!!!!!
Yay for delicious food, fresh air and sunshine, nights with uninterrupted sleep (huge!!!!), your own shower and not being tethered to the infusion machine! ❤