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Blondie1746
Multiple Myeloma Discussion • December 16, 2023
Experiencing Anemia Months After CAR-T?
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I have a support group member who had a CAR-T about 9 months ago. His myeloma numbers are 0. But over the past month or more, he is "losing" blood, or probably not making enough blood. He is anemic, Hemoglobin down to 7 and 8. Very tired, not much appetite. He has had a blood transfusion, but his drs are not sure what is going on. Has anyone had something similar? Any thoughts?
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Thomas
Multiple Myeloma Discussion • December 16, 2023
Managing Pain Meds: A Cautionary Story
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I did something very “not so smart.” After my radiation treatment last week, I felt a great deal better (80%) with pain on my spine. For whatever reason, I decided, without help from my doctor, to take myself off of about (75%) of my pain medications; OxyContin, Oxxcodone, and gabopenton. I was heavily medicated. The pain was debilitating for 5 months. Well needless to say, I went into massive withdrawal. It was one of the worst experiences of my life. I had every symptom known to man. I did meet with my doctor after four days and now I am on an appropriate plan. 8 days later and I am still very shaky and at times nauseous. My simple advice……Don’t ever do this!
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TheBloomingSpirit
Multiple Myeloma Discussion • December 13, 2023
Concerns About Xgeva: Side Effects & Stopping?
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Xgeva - concerns about bones after treatment. Worth it? Since myeloma seems to affect by bones most my doctor started me on Xgeva but I had some nausea so missed my last treatment. I understand it helps with the destruction of my bones from the myeloma while I am on it but am very concerned of it's likely hood of fractures in the spine once I stop. I was told that I would get one dose of Zometa at the end to help with this. So my question is putting up with the nausea and chance of fractures after worth it? What side effects has anyone dealt with and has anyone been treated with Xgeva and after stopping have increased fracture?? Thank you for your inputs
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Dave P
Multiple Myeloma Discussion • December 12, 2023
Progression on Dara/Pom - What's Next?
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Anyone else have this?: There is a monoclonal protein present overlying transferrin in the beta region that measures between 0.8 and 1.3 g/dl with suppression of polyclonal immunoglobulins. Immunofixation electrophoresis is consistent with the previously identified IgA kappa monoclonal gammopathy. The monoclonal protein cannot be accurately measured with this methodology. IFE also shows a small free kappa monoclonal protein (monoclonal protein #2) in the alpha-2 region. I ask my Dr and am just told the disease is "progressing"?? Since for 10 yrs I've watched the mspike, now not sure how well the meds are working since light chains are very high. Am on dara faspro and Pom this year and not seeing results but have to keep stopping the Pom due to low blood cells...Keep reading about other new meds like Ventaclave, etc?? My beta 2 is very high and i wonder what can bring that down? Thanks and happy holidays.
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SetyBlue
Multiple Myeloma Discussion • December 12, 2023
Experiencing Tingling and Weakness From Bactrim?
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I have been put on Bactrim (sulfamemethoxazole and trimethoprim) anti bacterial pills after ASCT. I am taking this drug three times a week, on Mondays, Wednesdays and Fridays. I am supposed to be on it for at least two months but I think I am getting weird side effects from it. I’ve been on it for a month now, and I have noticed that by Friday there’s tingling in my hands and feet, and I think I am getting some muscle weakness and slight dizziness as well. After being off it for Saturday and Sunday, some of the side effects are lessened, but then get worse by Friday. Has anyone experienced this with this drug?
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grayDolphin
Multiple Myeloma Discussion • December 12, 2023
Interpreting Pre-SCT Biopsy Results?
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Can someone interpret these results of husbands pre-stem cell bone marrow biopsy that was completed post RVD therapy (SCT is next week) Thanks! FINAL DIAGNOSIS A-D. Bone marrow, right iliac crest, aspirate with clot preparation and biopsy with touch imprints, and peripheral blood smear: 1. Monotypic lambda light chain restricted, hyperdiploid, plasma cells, 3% by morphologic differential. 2. Normocellular bone marrow for age (25%) with unremarkable background trilineage hematopoiesis.