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JoshHolt
Multiple Myeloma Discussion • 1d ago
Pain management
I'm all about the natural side of thinks, into naturopathy and am trying to avoid any opioids but it's getting to interfere with my quality of life, wondering what everyone does for pain management?
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nancynomad
Multiple Myeloma Discussion • 1d ago
Hyperlipidemic myeloma and MAGa
I believe I may have hyperlipidemic myeloma, a rare variant of myeloma which leads to high levels of cholesterol (usually MM is associated with low or normal cholesterol levels), possibly by decreased lipid degradation due to paraproteins complexing with lipoproteins, impaired lipolytic activity and paraprotein binding the LDL receptor inhibiting clearance. See “Elevated LDL Secondary to MM” https://www.lipid.org/resource/elevated-ldl-secondary-to-multiple-myeloma/. If it is due to paraproteins binding with lipoproteins, it would be a form of MAGa – monoclonal autoimmune gammopathies. While the origin of the antibody is a neoplastic clone of cells rather than a standard systemic autoimmune defect, the end result—a self-protein being targeted and disrupted by an antibody—is functionally an autoimmune phenomenon. From “MAGa: Monoclonal Autoimmune Gammopathies” published May 27, 2026 https://www.mdpi.com/2072-6694/18/11/1770: “monoclonal immunoglobulins (as measured in the M-spike), have long been overlooked in clinical research because they are thought to have no significant antibody function…In monoclonal autoimmune gammopathies (MAGa), repeated exposure to autoantigens may contribute to the development of multiple myeloma. Alternatively, these associations could reflect an underlying immune disorder that exists years before the diagnosis of multiple myeloma, thereby illustrating the natural course of the disease.” There are tests which can confirm both diagnoses, which I hope to have soon. But I wanted to ask, does anyone have any experience with hyperlipidemic myeloma or with MAGa?
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RickyT
Multiple Myeloma Discussion • 2d ago
Hip pain
I was diagnosed with Smoldering Multiple Myreloma 9/2024. My labs have been stable for the last 2yrs without any consistent climb in numbers. This past Friday, I began to notice right hip pain, most when first standing but it subsided later in the day. Saturday & today, the pain has been more noticeable & more frequent; again when first standing or after standing for a while. Has anyone experienced such a case or anything like this?
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Mandjcast
Multiple Myeloma Discussion • 2d ago
Plasma Cell Leukemia Patients
Hi. I am a 21 year survivor. Would love to chat with others who have this disease.
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Farrior75
Multiple Myeloma Discussion • 5d ago
IgA Lambda with t(11;14)
I’m hoping to connect with others who have IgA lambda multiple myeloma with the t(11;14) translocation, or anyone with t(11;14). My mom has IgA lambda with t(11;14), and I believe she may be approaching progression, so I’m trying to learn as much as possible to help my family make the best decisions regarding which treatments to pursue and in what order. As many of you probably know, t(11;14) is a somewhat unique subtype of myeloma and is classified as standard-risk. However, after doing a significant amount of research and speaking with other patients on different platforms, I’ve heard very mixed experiences with the traditional frontline approach D-VRd followed by transplant. Some people with t(11;14) have told me that treatments such as CAR-T or venetoclax-based therapy ultimately gave them their deepest response or longest remission. I would especially love to hear from anyone here with t(11;14) who has already gone through treatment. Which treatment worked best for you and how long did your remission last? I understand that everyone’s disease and treatment response can be different, but hearing real experiences from people with the same translocation and subtype would mean a lot to me and my family.
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cyanWoodpecker
Multiple Myeloma Discussion • 6d ago
CAR+ CTCL from CAR-T
About a year after CAR-T, I developed Cutaneous T-cell lymphoma on my leg. It contained CAR+ genetics resulting from CAR-T. It was resolved with Brentuximab and localized radiation. Just as it was resolved, MM reappeared. On Talvey for that. Then a lump on the pad of my thumb was biopsied as CAR+ CTCL. Anyone seen anything like this?