Car-T soon..

Hi. I’ve posted here before, you can read my updates in my profile. My (32f) mom (67f with stage 3 mm t(4;14) 80% in bone marrow at time of diagnosis in December 2020, ASCT in 2021, remission until July 2024 when first bone lesions were found and L4 fracture, did isa-kPD until disease progression in May 2025, femur fracture an many other lesions now including C1) will be getting her car-T cells infused on Jan 8th. The problem is, she is in an immense amount of pain and can hardly walk after she stubbed her toe on concrete and caused an avulsion fracture and many smaller fractures around the hardware they put in her left femur, which is essentially the only thing holding her leg together at this point. Palliative care has her on a pretty strong pain regimen (morphine, dilaudid, the works) but it’s not helping at all and she is so tired and in so much pain. Is there anything that anyone has found that helps relieve the bone lesion and fracture pain? I’m talking like outside of pain meds, any weird miracle something that has provided relief for you or a loved one? I don’t even know at this point. But my mom is so miserable and honestly sounds like she’s starting to give up. Even with the car-t, she is terrified to do it because she’s in so much pain she doesn’t know if she can add car-t on top of it….she has some radiation scheduled next week on her femur and C1, so hopefully that helps as well. But right now with her mobility being so limited, her doctors are worried it could impact her ability to receive her car-t cells. Her and I are supposed to move to Seattle in January and she’ll spend the first week in the hospital since she’s in a car-t trial.

I don’t know what I’m asking or what I need here, I guess just an encouraging word or something I can do to help distract my mom from the pain or something, anything at this point? I feel so helpless…and also getting intense flashbacks from our time with the ASCT and how brutal it was on her, and how scared I am for this next time…at least there’s no pandemic this time I guess. But yeah. I am scared and as her caregiver I’m trying to keep a level head with all of this but it is so hard. (I am in weekly therapy, at least.)

Thanks for reading and any advice you can provide, not asking for any medical advice or anything like that.

Posted Dec 10, 2025, 2:54 AM UTC

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