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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.
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Dawnie
Multiple Myeloma Discussion • July 17, 2025
Understanding a Missing M Spike Result?
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Has anyone had the experience that when you get your blood work done, the M Spike result does not show? I was told that meant the M spike was at zero, but I find that a bit hard to believe that they wouldn’t at least say zero or no result.
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Monica
Multiple Myeloma Discussion • July 16, 2025
SCT for Older Black Men: Seeking Experiences
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Hi everyone, I’m reaching out to hear from anyone who has gone through or supported a loved one through a stem cell transplant, especially if the patient was a Black man in his60s- 70s. My dad is currently preparing for the process, and we’re trying to gather as much real-life insight as possible. His only major health concerns outside of multiple myeloma are mild kidney disease (sometimes normal), maybe risk for mild malnutrition (thin/skinny body type)Doctors say he’s a good candidate overall, but of course, we know that age, kidney function, and being African American can all play a role in outcomes. If you or someone you know has a similar background, I’d love to hear: • How the transplant went (complications, recovery time, etc.) • How the body handled chemo • When were you able to be around others? (Family) • What helped the most during recovery—mentally, physically • Anything you wish you’d known ahead of time How long have you been in remission after transplant ? Appreciate any insight, encouragement, or lessons you’re open to sharing. Thank you in advance. -Monica
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BarbaraLove23
Multiple Myeloma Discussion • July 16, 2025
Asking About T-Cell Therapy Experiences
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Hello I have MM for three years and been ion 5 different medication with the shots in your stomach and nothing is helping me my kappa chain light is going up higher. My doctor wants me to have T Cell done but I'm afraid have anyone had it done yet if so can you share some light on it. My bloodwork is low also have anyone experienced any of this