CAR T-Cell Therapy Experiences
Welcome to our forum dedicated to sharing experiences with CAR-T cell therapy. Whether you've undergone treatment or supported a loved one through the process, your story is valuable. By sharing your journey, you can provide invaluable insights, support, and encouragement to others who may be considering or undergoing similar treatment.
Suggestions for Sharing:
-Describe your initial diagnosis and how you learned about CAR-T cell therapy.
-Share your thoughts and feelings leading up to and during treatment.
-Discuss any challenges or unexpected experiences you encountered along the way.
-Reflect on the impact of CAR-T cell therapy on your life and health post-treatment.
I was diagnosed with Multiple Myeloma in February 2019. I have a high risk type, IGA Lamda. At diagnosis, my bone marrow was Almost 90% cancer cells. After initial treatment of Velcade, Dex and Revlamid, I had a Stem Cell Transplant. That was very difficult! I relapsed after 10 months and my doctor put me in a Clinical Trial for Car-T Cell Therapy. It was much easier than the SCT, but because it was a trial, I was in the hospital for 15 days. It was Fall of 2020 and Covid was rampant. The CarT put me in remission immediately. I didn’t experience Neurotoxicity, but did have the Cytokine Release Storm. They were prepared to treat that, as soon as it started. The bone pain was unbearable and the pain meds didn’t touch it. I’m not sure how long that lasted, as I was in a weird state of mind! When it was over, everything went well and I continued to improve every day. I would do it again, if necessary. I relapsed again at around 10 months later. I was then put on Kyprolis, Dex and Darzalex. I had an anaphylactic shock reaction to my first dose of Darzalex, so was changed to Pomalyst. I did that trio once a week for the first year, then once every two weeks for another year. I’ve been in remission for 9 months, with Pomalyst as a maintenance chemo. 🙌🏼🙏🏻 Praying this remission lasts longer! I feel great now! 😊
Thank you for sharing! You've been on the roller coaster cycle so many myeloma patients experience, in one area or another.
Happy to hear that in this present state things are at bay and remission is in the now. It's great to hear of the options we now see, which help the doctors move to other considerations when others fail. Wishing you the very best with Car T Cell Therapy and keep feeling great! Best!
Diagnosed with multiple myeloma in June 2017 I started with some radiation and Revlimid/Velcade/Dex. Stem Cell transplant in January 2018 was a bit of a challenge, especially the Melphlan (sp.) Transplant was not a complete success so I received consolidation chemo of Kylrolis/Revlimid/Dex for four months.
Continued on Revlimid until relapse in May 2023. Switched up my chemo to Kylrolis/Darzalex Faspro and more radiation. Things were going along until May 2024 when it all went off the rails! A tumor was found on my C1 and my Doc's were worried about a potential fracture that could sever my spinal cord. On a visit to my lead Hematologist at the Mayo clinic my wife and doctor noticed I was talking jiberish, I was in the ICU that afternoon diagnosed with a brain poisoned by calcium. Bone marrow biopsy found my marrow saturated with myeloma cells. Spinal tap found myeloma cells in my spinal fluid. PET/CT found tumors all around my body. Treated with steroids for three days and my brain started working so I was moved to a cancer ward. I was hammered with four different chemo's simultaneously for 96 straight hours. This was the worst, I was discharged after ten days and learning how to walk again!
Spent the rest of the summer continuing with Kylrolis/Darzalex Faspro and Pomylist.
Ready for CAR-T in September '24 I had another Bone Marrow biopsy, PET/CT and spinal fluid tap. Biopsy shows 5% myeloma cells, spinal tap is clear but I'm still full of tumors. CAR-T went well with limited side effects. After day +30 my marrow is free of myeloma cells and the PET/CT shows no active tumors. Bone and joint pain are severe, I doesn't help that I have tumors in both knees. Fatigue is another big problem as my hemoglobin just won't come up where it should.
CAR-T is amazing! Hopefully it will become widely available and affordable to help more and more people.
