I have RRMM, IgG Kappa. I’m in the process for Car-T at Cleveland Clinic, having completed T-cell Harvest (for the second time due to low cell quality the first time around) three weeks ago. I’m waiting for the re-engineered cells with scheduled infusion date in early Nov. My bridge therapy is Selinexor/Dex/Darzalex, which is working pretty well to keep my Kappa protein in check. Lympho depletion is scheduled for a couple weeks out. I’m looking for someone who has gone through Car-T at CCL to share their experience with me, and provide any suggestions/guidance/perspective on what to expect from here on out and how to get through the next phases. The side effect possibilities look daunting. Thanks!

I have been diagnosed within the last 2 years and I am wondering if I am going to have to deal with the constant pain in my back. From what I have read it seems as though I will have the rest of my life with this condition. Is this true?

The collateral damage of multiple myeloma for me has been extensive compression fractures in most of my thoracic spine. The fractures have healed but the aching pain with any activity that has a gravitational pull (like walking, standing) remains and is quite limiting. I have tried many forms of PT, stretching, Pilates, acupuncture as well as a RFA nerve ablation. Nothing has provided the relief I hoped for. Wondering if anyone has had similar issues and found something that helped.

Extramedullary Disease (EMD) I have been recently diagnosed with MM with extramedullary disease as my high risk factor. I would be interested to hear from others here on when they were diagnosed, what treatments they received and how they are doing. I have seen the recent positive developments with some bispecifics having good response rates with people with EMD which is encouraging.

1 q gain. Looking for feedback from patients who have 1 Q gain. How are they doing with treatment. Did they have a transplant? And how long did that work? Any unique problems due to 1 Q gain.? Thanks.

What is your experience with Tecvayli and/or Elranatamab Injection? I understand multiple infections, on antibiotics, maybe emergency room visits. Also what is your experience with Talvey. I understand that you lose your sense of taste, lose weight, nails fall off and skin peels. And Myeloma comes back when treatment stops. Curious about these treatment options.

I am new to this group. I was diagnosed with Essential Thrombocytosis about 10 years ago and I am looking for treatment options other than Hydroxeria.

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