Chimeric Antigen Receptor (CAR) T-Cell Therapy

UPDATE: Our return to Houston has been postponed until 9 September. I will be undergoing additional chemotherapy through the last week of August.

Last week was the longest period of constant, intense, breathtaking pain I have ever experienced. And it diminished almost as quickly as it began — so quickly, in fact, that I almost dared not to think that it had truly diminished. Spasms still strike randomly, and I still feel as though someone has tried to beat me to death. What I lack on the outside – visible bruises – I feel on the inside: bruised, battered, and sore.

Is the radiation treatment responsible for the pain? Or is it my beleaguered bones and the extra effort of my weary muscles to shore up the weak areas? I don’t know. All I know is that the pain has subsided, if only for now, and I am grateful to God.

I took a much needed break from the pain medication, too. It has its own nasty tricks it likes to play on you; namely, it stops up the plumbing. I think I have tried at least two new suggestions for relief. The last one came from my clinic oncologist’s nurse.

“Have you tried apple juice and prune juice? You mix equal parts and drink it hot.”

I had to admit I hadn’t heard that one before, but I happen to like both apple and prune juice. The combination actually sounded pretty good to me too. So John picked up a bottle of apple juice for me and mixed it with the prune juice already in my fridge. He warmed it up in the microwave, and I sipped it like a sweet cup of coffee, eight ounces last night and another eight this morning. That along with a dozen other regimens I tried finally did the trick. Now to maintain.

I had hoped to schedule an appointment with Dr. Joudeh to discuss “other therapies" besides CART. I think he wanted to tell me more about them but thought I had already made up my mind. He would be wrong about that. One can make an informed decision only when one has all the pertinent information to consider. I don’t know what else, if anything, there is out there.

I was able to run the information by the CART team. Dr. Joudeh specifically asked if my doctor at MD Anderson had talked to me about bispecific antibodies and the drugs approved for this therapy. To my surprise, my CART team responded with the following:

"All those alternatives she listed are used in patients that have failed at least 4 lines of therapy, at this time, per FDA approval, used in relapse refractory patients. She has only had 2 lines of therapy."

I didn't know there were more than one or two "lines of therapy" for Multiple Myeloma. I think the last resort is a second stem cell transplant, and if it came to that, it would be a hematopoietic transplant, meaning I would need a donor. The one I underwent in 2021 was autologous, meaning the stem cells were harvested from my own body when the percentage of myeloma cells was very low.

First, the schedule for CART.

John and I will return to Houston on 5 August and go straight to my cousins' house.

By the way, I want to introduce you to this wonderful couple who have stepped up in a monumental way to be the biggest part of my "care team" while I undergo this treatment. I'll share this picture of the two of them at dinner with John and me during one of my first trips to Houston.

This is Brian and Wynne. There is so much to tell about these wonderful Christian cousins of mine, but I think I will save the stories for a separate post.

Yesterday I began adding appointments to my phone calendar. So far they include labs, PET scan, EKG, brain MRI, and a follow-up appointment with Dr. Pasvolsky. There is something every day including daily visits for ten days following the CAR T-cell infusion, which is scheduled for 13 August. The 30-day countdown begins the next day and basically means that I should be good to go home by 12 September -- much sooner than I had originally anticipated.

I have to admit the thought has crossed my mind about how I might speed up the process.

Yes, Shelly, I know -- Maybe I can do it this time without cheating! (Another story for another day. ;-)

Honestly, though, if my recovery is complication free, why wouldn't there be the possibility that I could skip out on my house arrest a little early? That's a question for later, but hopefully, it will be a valid one when the time comes.

So, is everyone thoroughly confused about what's going on? It's all happening so fast it's hard for me to keep track of everything. The CART nurse sent an outline a few days ago, so I'll share it here:

APP = Advanced-Practice Providers

You know what would be awesome? If some of you could make the trip to Houston during my time in captivity. There are dozens of hotels close by. The DoubleTree gives you unlimited warm, gooey chocolate chip cookies that make the stay there more than worth it, in my opinion, just for the cookies. I won't be able to go out to eat, but I would welcome takeout...or cookies from DoubleTree. Y'all just let me know if you're coming!