my CAR-T experience

[Javelin18]

I was part of the City of Hope Phase I CAR-T trial. Here's my experience with it.

I got my infusion of cells on July 5. The first week I noticed inflammation in my bones, but didn't have a fever until day 9. My temperature went to 100 for about 6 hours.

I checked out of the hospital after 14 days and stayed at a hotel on campus. I ended up back in the hospital a couple times over the next two weeks. The first time for a few days because I was vomiting. The second time I had bad pain in my spine.

The spine was treated with radiation, which left my esophagus badly inflamed, making it hard to eat. I lost about 20 lbs over the course of the treatment.

The follow up scan showed dramatic decrease in bone lesions, but metastatic lesions in my liver, so I didn't get the planned second infusion of CAR-T cells. I'm headed back to UCLA to discuss the next steps.

[NWLiving]

Oh miserable. I hope the new steps are better. Thanks for posting and sending ((hugs)).

[HopingForTheBest1]

I have been following your posts as I have been looking at a CAR T trial for myself as a possible Plan B at some point in the future.

Your experience is helpful to hear about. Very sorry to hear you are having a tough time. It seems that I have been reading more negative than positive experiences.

Wishing you well.

🙏

[Tall_Allen]

Well, at least it did some good. Maybe request histology and IHC of a liver met. There may be some kind of targeted therapy on a clinical trial that you qualify for. I recommend these (they may have to send to the Wang Lab at Duke to get all those stains):

AR (androgen receptor), PSA, PSMA, MSH2, MSH6, STEAP1, PD-L1, chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP), DLL-3, CD56, Somatostatin (SST)

[GeorgeGlass in reply to Tall_Allen]

where is that clinical trial being conducted?

[GP24]

Liver mets are considered difficult to treat with Lu177 PSMA but this study concludes:

"Conclusion: 177Lu-PSMA-617 RLT frequently controlled liver metastases, resulting in long PFS and significantly improved OS. "

pubmed.ncbi.nlm.nih.gov/323...

If there are just a few liver mets present they can also be radiated with SBRT.

[tango65]

Liver metastases could be treated with radioactive microspheres

pcri.org/insights-blog/2015...

sirtex.com/us/patients/sir-...

stanfordhealthcare.org/medi....

[Shooter1]

Darn, you got the good, bad and ugly out of that treatment.

[slpdvmmd]

Thank you for sharing this and I wish you the best in your new direction of treatment.

[spw1]

Thank you for undergoing Phase 1 trial. Sorry to hear that there was not a dramatic decrease in all the mets and pain. Wish you well with the next treatment. 🙏

[longleaf]

Thank you for sharing your experience. Praying for you.

[keepinon]

Wow. Rough times. At least you got some good news with your bone lesions. Good luck with your next step. Thanks for keeping us up to date.

[Carlosbach]

Thanks for taking the time to post an update, especially after all you've been through with this treatment. Hope you get some rest and recovery to strengthen you for the next phase.

[Seasid]

Can you ask for a liquid biopsy at PSA 10? Maybe Keytruda could work?

[CAMPSOUPS]

I thought it was kind of quiet from your end. I am glad actually that you are with us or not hospitalized.

So sorry this didnt work out.

I am still optimistic for you with the good medical care you have and the potential options.

Hopefully the bone met reduction will be a good "let the foot off the gas coast awhile" result.

Again as I've said thank you so much for your diligence in working towards and entering a trial and for keeping us informed here.

Hope to hear some better or optimistic treatment news from you in the near future. My absolute best wishes.

[ellie2211]

Thank you for letting us know how you're doing. I'm glad that at least you got some positive news about your bones. Hoping you have good options over at UCLA