Lately, I feel like I’ve been sucked into a whirlpool. Medical developments have moved quickly -- occasionally with a few speed bumps.

Stanford called me on Thursday evening with the go ahead for CAR-T now that I’ve decided to go with Carvykti. It has more risks than the other choice (Acbema), but the disease progression with Carvkyti is 2+ years, with Acbema only 10 months. Once the disease returns, you can't do CAR-T a second time so then they need to consider other medical options like Bispecifics (the one you need weekly injections for the rest of your life). As my Kaiser oncologist Dr. Green pointed out, in 2 years there will likely be a lot more medical options for me given how rapidly new meds and procedures are developing.

This is my preliminary schedule for the next few weeks and months:

February 20. I go to Stanford for the day for apheresis (extraction of my T-cells). It’s supposed to last ~4 hours. My friend Marguerite will drive me to and from Stanford (they require me to have a driver). Yesterday, I found out that I needed to have two tests by Feb 16 in order for this to happen on February 20: a PET/CT scan and a 24 hour urinalysis. Unfortunately, Kaiser Oakland had no slots for a PET/CT scan until March. Kaiser’s transplant coordinator Audrey scoured all Kaiser hospitals within 60 miles. She finally found an open slot at Kaiser Vallejo tomorrow (Wednesday Feb. 15). It’s a little bit of a haul, but at least I can get the procedure done.

February 21- April 14. I'll be home and resuming my current chemo regimen. Same drill as before. I can text, email, phone and Zoom but need to minimize in-person contacts.

April 15-18. I go to Stanford for chemo to prepare for the infusion of newly engineered T-cells. I’ll be staying nearby Stanford (lodging yet to be worked out.*) My friend Polly will cover being my caregiver those four days.

April 19. I’m admitted to Stanford hospital.

April 20. Bioengineered T-cells are infused. This is considered “D day!”

April 21- ?? ~2 weeks in the hospital. This is when the likelihood of bad side-effects like Cytokine Release Syndrome and Neurotoxity can happen. It’s also possible for them to pop up in later weeks.

MAY I’m discharged to nearby lodging.* For roughly four weeks I’ll need to stay nearby with a 24/7 caregiver. Now that the approximate dates are known, I can work with Karla and other friends who have offered to help schedule or be a caregiver.

Friends have asked about being my caregiver. Stanford doesn’t care if there are rotating caregivers, but they suggest not having a daily/constant turnover as it invites potential outside infection, virus, etc since my immune system will basically be shot (including wiping out all my previous vaccinations). A caregiver needs to be vaxxed and boosted and preferably have isolated for 2 days. They’ll need a car as they will need to take me in for various appointments during that month I’m staying nearby Stanford. Duties are to be with me pretty much 24/7, make sure I eat, call 911 or take me to the hospital if I have terrible symptoms. Stanford prefers local caregivers since these dates aren’t necessarily fixed and the schedule may change at the last minute. There is also some concern that friends who fly to get here may expose me to various infections and viruses they may have picked up along the way.

Other friends have asked me when they can just come visit when I'm in the hospital… If I’m doing ok, I can have visitors. Specific guidelines will be announced.

Friends have also asked when they can come see me at home in Berkeley once I’m back from Stanford. It likely to be several months after I get home -- i.e., towards the end of 2023 or into 2024. I’ll be very immunosuppressed and will still have to take a lot of precautions.

*Stanford will provide me with lodging and meals, but it might be a hotel room with minimal kitchen facilities. The makers of Carvykti (Johnson and Johnson) may also offer to cover lodging which the Stanford social worker says is a better deal (maybe an apartment rather than a hotel room, maybe even 2 beds rather than a bed and a sofa). Details still being worked out.

On this Valentine's Day, I'm reminded of how much caregiving I got from Tim during my previous stem cell transplant back in 2017. A lot of memories of that time we spent together. I know my friends are stepping in to support and help out one way or another. I'll try to keep up this blog and let everyone know what's happening.

Thanks!

Snow Plant (Sarcodes sanguinea) from Yosemite National Park