CAR-T

I had a few more blood tests and they confirmed that I have relapsed. The myeloma is starting to party inside of me. I was surprised by how quick my light chains and m-band ratcheted up on the first blood test. Things have slowed down a bit. Seems like I’m going up about 6-8 points a week with my light chains. Which is funny, the myeloma grew at a faster rate when I was on chemo (12 points a week) versus not being on it. (I did light chain math 🧮)

As you can imagine, I’ve been having a lot of doctor conversations and from that lots of tests. I am definitely starting to have medical fatigue from it all.

I decided to sign up for Car-t, which is genetically engineering my T cells to go after the myeloma. I was referred to UCSF. My myeloma specialist is from UCSF, so he instantly told my oncologist he wanted to take me on, which was nice for a change.

I decided to go with Carvykti Car-t. I had two choices of Car-t products. One that didn’t have many side effects but didn’t work as well, or Carvykti which works a lot better against the cancer but has a bigger potential for some nasty side effects.

I find that cancer is full of impossible choices, with a lot of the time having to choose between the lesser of evils. I do feel optimistic about Car-t therapy though. In my opinion, I think it’s probably the best treatment option for myeloma out there. I felt I had to swing for the fences with Carvykti. I’m starting to feel like I’m running out of treatment options. My specialist said he has some patients that are 5+ years myeloma free from Car-t and it’s starting to look like a cure for them.

I had a Pet scan this morning to look for cancer lesions. The myeloma specialist said if it was all clear that I could potentially not have to do any bridging chemo between from when I have my cells collected and infusion time, which is about a month. It came back as I’m writing this and it is all clear! Yay for exercise, meditation, carrots, mung beans and broccoli (or maybe just luck)!

I had my last chemo infusion 5 weeks ago. I’m having my T-cells collect on July 8, and it’s about 6 weeks to engineer them and send them back. So if I don’t need bridge chemo, that’s a good couple of months without chemo. I sure my body will appreciate that.

Someone asked me if I’m nervous about being off of chemo for a while as I have active myeloma now. I’m not really.

I took myself off maintenance chemo about 3 years ago after I got covid and had to stop. I saw that the chemo actually wasn’t doing anything. The myeloma was just poking along, rising about 10 light chain points a month. This time it is growing faster, but hopefully I can make it until my anti-myeloma army get infused back in.

I’m trying really hard to keep my expectations in check. It’s so easy to look at the amazing data (potentially cured) and hope for that myself. I know full well that this treatment could easily flop and be back in this same spot or worse (looking at you neurological problems 😡).

Pray for the best, prepare for the worst?