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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?
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lrose48
Multiple Myeloma Discussion • July 17, 2025
Developing Neuropathy Years Later?
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Hello, I was diagnosed in 2017, had SCT 2018. I am not on any maintenance since 2018 and in remission. This past year, I have been getting neuropathy in both of my feet and hands. (tingling and achy) Is it possible to get neuropathy now after nine years due to treatment? I have diabetes but my A1C 5.3 and on no meds. I do not have blurred vision or headaches that usually coincides with diabetes. I also had my nerves tested in feet and hands and I do not have any damage. Thank you in advance.