I have been diagnosed with MDS/MPN unspecified - I don’t see that as an option here under diagnosis. It is very confusing. Other than ferrous sulfate for anemia I’m in a watch and wait stage. So many questions.

Hello, I was wondering how common MRD- is at the 3-month mark of CAR-T? I had Carvykti on July 11 and am waiting on the results of my bone marrow biopsy. So far blood work looks good but I'm nervous about the biopsy results. If I don't achieve MRD-, is that bad? And does that mean it still may be achieved at some point? Thank you!

I am excited to have found this group.

Did you know that treatments for Multiple Myeloma (MM) and its early stages (MGUS and SMM) might affect our eyes? 👁️ Some patients experience conditions like cataracts or glaucoma, and we want to understand why. 🔍 Your insights can make a difference. 💬💡 Together, we can pave the way for better eye care 🧑‍⚕️👀 for MM patients! 🌟 Click here to take this quick survey.: https://healthtree.org/myeloma/curehub/private/research/wSBMWdUZegYLGW1XEFRc?utm_source=social+media&utm_medium=facebook&utm_campaign=eyehealth&utm_content=general

I’m 46 years old Italian woman and my myeloma was diagnosticated in 1997, 27 years ago , when I was just 18 years old. I had really a lot of Line theraphy and twice auto trasplantation. Now I have Dara + Poma + Dex, from about 2 years. I know I’m really luky but in this last year I feel my self too much tired for all day and all time, I have had stopped to work for this and I’ m very demoralized , every thing I have to do is very hard due to my fatigue and pain. Anyone can suggest me how to make my quality of life better ? Thanks ❤️

Good morning pray all are having a good day.

In response to the question about 1q gain. As always, every myeloma profile is different & every patient responds differently to treatment. I was diagnosed with aggressive myeloma 15 years ago (October 2009). It was considered so at least in part because of my FISH profile: 1q gain (4 copies). Since 2010 I have been through 5 lines of treatment, including 2 stem cell transplants (2010 & 2018) and most recently CAR-T therapy (2022). After every line I responded well, and my response to the CAR-T continues to this day. Note that I am 76, take 2 hours of physical exercise everyday, eat healthy, nutritious foods, stay positive whatever the circumstances, and I am optimistic about my survival prospects. These factors may be very important in my overall longevity despite the genetic profile & many lines of treatment. Good luck on your myeloma journeys.

CAR T therapy is a growing option for multiple myeloma patients and investigational CAR T treatments and targets are now in development. Investigational treatments using different targets could help patients who have relapsed after standard of care myeloma therapies including the newest BCMA-targeting immunotherapies.   The QUINTESSENTIAL Phase II clinical trial aims to test the impact of an investigational CAR T therapy called BMS-986393, which targets GPRC5D, in relapsed or refractory multiple myeloma patients.  This multi-center study is open in over 35 locations. Please click the link to learn more or to join the study: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT06297226?cid=s_2839283 Funded by Bristol Myers Squibb

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.