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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Hello, I am a high risk “”q1 and T53 “” MM, had the SCT and now I am VGPR , can patient with high risk tell me how they have been in remission and how many relapse they had

Supposed to have my dara infusion (for maintenance) on Monday. I have a cold. Have to wait until Monday morning to see if I can go or not. I don’t want to screw up my schedule but I’m also concerned that my labs will be off if I have a cold. Thoughts ?

Hello, I'm trying to figure out if I have a neurological issue or If it's normal after 3 1/2 years of treatment to have this type of side effect . Has anyone else experienced consistent confusion feeling like you were drunk, confused and dizzy at certain times of day ? For me, it's a routine side effect 3- 5 times a week for the past several months. It seems like since the having Pomalyst . However, I feel that it's also when the dexamethasone wh with certain chemo, combined for example velcade and kyprolis, and empliciti. I've had brain MRI And it turned out normal.

After a two-year clinical trial measuring the possible effectiveness of iberdomide (solely, no other drugs) on high-risk smoldering multiple myeloma, my MRD measurements dropped from 273,088 clonal cells down to 692, which of course is great. Yet it's not as close to zero as I was hoping for. Part of the trial's intent was to see if iberdomide could be effective in arresting high-risk SMM's possible progression to MM, but could there possibly be another trial that seeks to drive that 692 down to even less? Feels like with these great results, there might also be a way to prevent MM potential (in essence, perhaps a potential 'cure'?). My team at Emory has been great but they are not aware of any clinical trial that would attempt to further reduce the clonal cell count. Anyone here, especially other providers/clinics, know of anything? Thanks.