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by diskzero 1594 days ago
CAR-T therapy is indeed very cool and very promising against certain lymphomas. My wife had triple-hit DLBPL (rearrangements of the c-MYC, BLC-2 and BCL-6 genes) and received CAR-T therapy. The therapy itself almost killed her due to neurotoxicity and other immune responses. We were initially very optimistic as the CAR-T cells rapidly destroyed the cancer cells and visible signs of the cancer on her body vanished. The cancer is her brain was eliminated, but after a few weeks, the lymphoma in her body came raging back, causing pleural effusion, swelling and horrible pain. Keytruda (pembrolizumab) was started as a salvage therapy but wasn't effective. Time of diagnosis to death was 10 months. CAR-T was administered in the middle of July and Melanie died on the first of October.

For those wondering, she received several rounds of DA-EPOCH-R chemo for the lymphoma, high dose methotrexate for the CNS involvement, had a port installed in her chest and an Ommaya on her skull that allowed drugs to be put into her brain (intrathecal treatment.)

The first rounds of chemo were pretty effective and she had a few good months. The brain involvement eventually damaged some nerves which caused Bell's palsy, which causes eye droop and facial paralysis. It sort of looks like the results of a stroke.

For those curious, the CAR-T therapy itself was $650,000 US. Getting the blood to create the T-cells involved yet another special catheter getting put in to do the draw. The CAR-T infusion was a big deal at the cancer center; lots of staff came by to observe. It was also super stressful for Melanie and everyone as there was a pretty fast reaction to the infusion. She ended up in the ER about six hours later and was in the ICU for about a week.

One thing I do wonder is if some of the drugs used to moderate the CAR-T cell expansion slowed things down enough that some of the cancer was able to avoid the T-cells? Regardless, if things weren't slowed down, she would have died from the infusion.

6 comments

Wow, I am so sorry. Thank you for sharing part of Melanie's story.

Your thought about the drugs maybe limiting the effect of the CAR-T is an interesting one and the subject of ongoing investigation. One common drug used for CAR-T related cytokine release syndrome, tocilizumab, does not appear to have negative effects on CAR-T proliferation or efficacy. However, it doesn't seem to do as much for neurotoxicity (which seems to be a separate mechanism from the cytokine system), and they often have to resort to steroids for that. Steroids do dampen T-cell activity, but to what degree that impacts CAR-T effectiveness is not clear. However, as you mention, sometimes you are left without much choice.

> Steroids do dampen T-cell activity, but to what degree that impacts CAR-T effectiveness is not clear.

It's an interesting question. Tangential, but in the early days of discussing how to incorporate anti-PD1s into different treatments, there was lots of concern about the negative effects of steroids --let alone chemo-- on T-cell function. Yet a few years later, aPD1 + chemo is well established in lots of settings.

And likewise, despite data from mouse models that steroids and chemo do impair T-cell function, we're now seeing CAR-Ts and also CD3-engaging bispecific Abs combined directly with chemo - again, with good efficacy.

Off topic, having seen your wife go through her experience, if you personally had the same issues, would you choose the same treatment path?

I watched my dad go through a failed bone marrow transplant and my current stance is “no”.

Curious to hear your thoughts if you’re able to share.

If I knew that my outcome and experience would be identical, I wouldn't have the CAR-T therapy. The chemo (DA-EPOCH and methotrexate) gave Mel a few months of life with decent quality, but then things got very very difficult. The question for me would be, how do you determine when to stop treatment? The therapies keep improving, so that keeps hope alive.
My deepest condolences for your loss.
Thank you.
My condolences
Many thanks.
That must have been harsh. Please accept my condolences!
Thanks. Yes, I hope life will be kind to you and you don't have to experience anything similar.
I'm so sorry for your loss.
Thank you.