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Orlando1
Multiple Myeloma Discussion • July 22, 2025
My Journey to Remission with Linvoseltamab
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I'm a Brazilian male 56 yo. I was diagnostic with mm a 18 months ago , my hematologist in Brasil told me I will survive for 2 or 3 years . I never lost my faith in God and I decided to fight doesn't matter what it rakes I start a quimioterapy at University of Miami and never have any side effect , after 6 months I was invited for a trail with a new medicine , Linvoseltamab , and I'm been in remission since January of 2025 . I did another bone marrow biopsy last week and came with deep zero for cancer cells, and my pet scan shows no lesion on my bones. I'm so happy to share my experience with the doctors at UM and I'm hoping this medicine will be the begging of a cure for MM. Thank you.
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CHidalgo
Multiple Myeloma Discussion • July 22, 2025
M Protein Rise After Dex Reduction: Thoughts?
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Hello Fellow Warriors I have IGA Lamda Mutiple Myeloma High RIsk. I have been doing immunotherapy for 6 months now. About 3 months ago I requested the dosage of my dex be lowered from 40 to 20mg. Since then my M protein has gone up. I was at .3 then the following month it went to .4 and then this month it is still at .4 Could this be due to the reduction of the dex? I really dont want to go back to the higher dose but if it is whats causing my numbers not to drop anymore then maybe I should...
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themyelomagal
Multiple Myeloma Discussion • July 22, 2025
HRT After Transplant: Sharing Experiences?
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Hi! Interested to hear the experiences of those who have started HRT after SCT. I was diagnosed at 28 (33 now) and have been managing the effects of menopause since my transplant in 2021. There’s been hesitancy from my doctors in the past as I take Revlimid for maintenance (5mg) and they don’t have a lot of data for people my age. I take baby Asprin in conjunction with the Revlimid. It’s hard to differentiate between menopause and chemo symptoms sometimes, but I have a psychiatrist wondering if it would help with my anxiety, energy levels, etc. Thanks in advance!
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SteveD
Multiple Myeloma Discussion • July 21, 2025
Connecting at the Scenic Shore 150 Ride?
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Is anyone in this group participating in LLS's Scenic Shore 150 bike ride this weekend in Wisconsin? Looks like we might have a little rain on Saturday but it'll be plenty warm both days. I'd love to meet up with any fellow Myeloma survivors doing the ride.
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Crosby0220
Multiple Myeloma Discussion • July 21, 2025
Managing Dexamethasone Sensitivity?
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Hello, I am 5 years post SCT with Kappa Myeloma. Recent pet scan indicates a spot on my Tibia so maintenance plan has changed. On pomelyst, kyprolis, dexamethazone. 3 weeks on, 1 off. I’m finding I’m highly sensitive to dex. 20 mg. I wanted to ask my oncologist could we reduce that dose even more but I don’t want it to impede my treatment. Was just wondering if others have experience a high sensitivity to it as well. I work full-time and try to time it so I have the weekend to recover, but it takes about three full days to feel back to normal.
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GeneMark
Multiple Myeloma Discussion • July 19, 2025
Confusing Lab Results: Lambda to Kappa Change?
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I was diagnosed March 2025 LgG lambda Free Light chain with M-Spike 0f 2.73. All lab numbers have improved significantly since then with latest M-Spike of .3. The confusing part is commentary says tht Immunofixation shows monoclonial protein LgG Kappa Light chain at ,2 of total m-spike of .3... Is this possible to change from lambda free to kappa free light chain? Small print from labcorp suggests that Darzalex (which I am on) might cause a false positive. It's been a couple of weeks since I noted this to oncologist..Have any of you had similar situation? .
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KatManDu
Multiple Myeloma Discussion • July 19, 2025
Experience With Cleveland Clinic Virtual Opinion?
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Hello! I was diagnosed with IgA lambda smoldering this year after a year of fatigue, shortness of breath, iron deficiency without anemia, and a weird sudden intolerance to alcohol. Still unsure if these symptoms are really attributable to the myeloma or if I have something else going on. I'm considering doing one of those virtual second opinion options at Cleveland clinic just to get a second set of eyes on my labs and imaging. Anyone have experience with that?
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DIahanna • Admin
Multiple Myeloma Discussion • July 18, 2025
Heads Up: Employer Healthcare Cost Increases
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The cost of group healthcare will be rising in over 50% of employer group plans. Expect the costs increase of between 4-8.5%. This may be passed on to employees through increased co-pays and Out of pocket maximums. Premiums may also be affected.
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DIahanna • Admin
Multiple Myeloma Discussion • July 18, 2025
Medical Debt & Credit Reports: An Update
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The Biden Administratio introduced a rule that medical debt had to be excluded form Credit Report. Now a Federal Judge in Texas has reversed that rule siting overstep. Medical debt will ow be back in your credit report, brining harm to a lot of people.
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pinkShell
Multiple Myeloma Discussion • July 18, 2025
Thoughts on Stopping Ninlaro Maintenance?
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I had a stem cell treatment 8 years ago. I am on maintenance therapy with Ninlaro 4mg, once a week for 3/4 weeks. I wonder if I should stop treatment with this protease inhibitor. Any thoughts?