I’ve gotten a lot of inquiries from folks about the status of my CAR-T treatment as well as what's involved. It seems like I’ve run into a comedy of errors. Even though I received notice from Kaiser three weeks ago that I was now authorized to get CAR-T treatment at Stanford, basically nothing happened until a couple days ago. After many calls to Kaiser and to Stanford, things got very screwy. Kaiser kept telling me they faxed the authorization to Stanford, but Stanford kept telling me they never received the authorization. It reminded me of the old comedy skit, Who’s On First? I’ve talked with the oncology folks at Kaiser, my Kaiser case workers as well as the Outside Referral departments at both Kaiser and Stanford. Kaiser kept insisting they had faxed the forms to Stanford, Stanford kept insisting they never got the forms. In case you’re wondering, the authorization forms I got three weeks ago were not the official forms needed to proceed so I didn't have the option of just faxing the forms myself. When I finally got someone at Kaiser who gave me the fax number they were faxing the authorization forms to, Stanford told me this was not the right fax number. (Who knows where they went.) In any case, Stanford gave me the “correct” fax number which I then gave back to Kaiser. Two days later, Stanford told me they had indeed gotten the authorization forms, and now someone would get back to me sometime this week. Hopefully this will be to set up a meeting over at Stanford to begin planning for my CAR-T treatment. With each passing day, my list of questions for Stanford keeps growing. (Do I need to bring my own toothbrush, and other more serious questions.) Even when a meeting is scheduled, it’s not clear how soon the actual treatment will start. It could be a few weeks or even a couple months. Whether at Stanford or at UCSF, there are limited slots for CAR-T. I don’t know where my case is in the lineup. I'm also waiting for a second opinion at UCSF which just got finalized and I'm now waiting for their report.

The big issue for me is that the longer I have to wait, the greater the possibility that my eligibility for CAR-T will be compromised. That is, if my current cancer regimen isn’t keeping my blood levels stable, I might not be within the eligibility window for CAR-T. My hemoglobin level is dropping to the point where my oncologist mentioned possibly needing a blood transfusion some time in the near future. That might not kick me out of eligibility, but it’s worrisome.

From my multiple myeloma support group, I learned that those few people who have had CAR-T therapy were actually part of clinical trials. Among other things, being in a clinical trial covered all the costs of the procedures including lodging and meals. In my case, I'm now one of the first patients to get CAR-T not in a clinical trial now that it's been formally approved by the FDA. It remains to be seen what will get covered by Kaiser. The latest cost estimate for CAR-T alone is close to a half-million dollars.

Meanwhile, I’m trying to get organized for what could be a long stay over at Stanford and Palo Alto. Friends and neighbors are set to check on my house and the garden while I’m gone. Others are checking on possible places for me to stay once I'm out of the hospital but still need to stay close to the Stanford hospital. It’s tiresome to see how many little chores from bills to houseplants to mail that I’m trying to make sure get dealt with. When I worked at Through the Looking Glass, the clinicians who provided assistance to clients would say they wished they had their own advocate and case worker for themselves. I certainly understand the feeling.

On a related note, I’m still having a lot of pain with my jaw osteonecrosis. The exposed bone has grown a bit, causing more pain. Unfortunately, my oral surgeon as well as the dental specialist at UCSF both agree that there isn’t anything that can be done. Trying to do minor surgery to correct the problem routinely causes more problems in 95% of patients. What’s left is to do pain management. I grew up in a household where taking aspirin was a big deal, but I know from Tim that staying on top of the pain is crucial. Otherwise, it’s hard to climb out of severe pain. So, with hydrocodone in hand, I’m trying to balance taking meds and staying on top of the pain. Since CAR-T won't address the jaw osteonecrosis, it seems like I'm going to have to deal with the jaw pain even after successful CAR-T therapy.

This is not a very cheery blog, but it gives me a chance to vent and also summarize for myself what’s going on. Since my immune system is increasingly compromised, more than ever I have to maintain a very strict regime as far as contacts with others. But, I know that everyone out there is behind me in this "journey" even if we don't get together face-to-face. Tim and I hated the word "journey" since it sounds like something out of a travel brochure. This is not a place I would have chosen to go to.

Although these aren't the usual flower photos in my blog, they provide an overview of the CAR-T procedure as well as comparing the two new treatments: CAR-T and Bispecifics.