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CAR-T sounds great, but I'm really scared of the potential side effects. I call myself the "weird allergy girl," and it's my understanding, the CAR-T can make the immune system become overactive. (I'm still learning about all of this - forgive me if I use incorrect terminology.) Thank you!
Add nerve wracking, extreme stress and anxiety worrying about the unfortunate circumstance of MM, that being the inevitable relapse. Like I stated previously, I'm hoping for a long stretch before relapse, and by then there is a more tolerable and less nauseating newer treatment. I think I'd rather be a guinea pig and try something non-FDA approved and should that fail, then opt for another SCT/BMT or give Carvykti a shot.
🤔 😟🤯
I had a stem cell transplant back is 2017. It was harsh for sure. But, I'm still on Pomalyst and Darzalex since the transplant. I'm high risk. It did get my myeloma under control. I hope I can get more time out of this one. Thinking about another transplant or CAR-T is very daunting.
I was told by my Mayo Car T oncologist that they were getting a 50% remission of 3 yrs for their Car T patients. Only info available as that was how long they were administering Car T. Yes, it was mighty disappointing to go through 6 weeks away from home and it didn’t hold up at least a yr. I’m currently on a bispecific regime going on 4 months. I’ve gone thru most of the MM treatments so clinic trials maybe last option if I decide I want to put myself through extended stays from home again.
Howeler, I'm surprised you relapsed so quickly after the CAR-T. From what I've read, the Carvykti CAR-T gives a patient about 60 months before possible relapse. My oncologist is not for CAR-T, he would rather his patients get another SCT/BMT. I myself would rather not get either one, I'd hope there's another option besides those two. I certainly would not want another SCT/BMT. The first 30 days post-transplant kicked the crap out of me, the melphalan is a bitch. It was nauseating beyond belief. Some info concerning Carvykti:
A revolutionary drug made in N.J. is giving cancer patients years of their lives back - nj.com https://share.google/MudflFtbUSz9tDNS9
What is the success rate for Carvykti for Multiple Myeloma?
What is the success rate for Carvykti for Multiple Myeloma? https://share.google/IRZySOumyjk9QzLWJ
I had the car T cell transplant in September mine went great I have had no side effects or any other problems so glad I done it
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