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anaGazana
Multiple Myeloma Discussion • July 10, 2024
Sharing IVIG Experiences & Zyrtec Info?
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My doctor wants to start me on monthly IVIG infusions to boost my immune system. My IGG levels remain in the 200's range due to myeloma treatment. I have read the long list of possible side effects. If you receive IVIG infusions, can you share your experience. I know that pre-medication with Benadryl and Tylenol is standard. I cannot take Benadryl due to a paradoxical reaction, so my doctor is recommending Zyrtec. If you pre-medicate with Zyrtec, what is the dosage? z
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construKction
Multiple Myeloma Discussion • July 10, 2024
Diagnosed Young: Sharing Experiences?
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Any other young multiple myeloma patients here? I'm 36, was diagnosed last year at 35. I've done 3 cycles of RvD for induction therapy and ASCT. BMB and blood tests showed no detectable levels of disease, VGPR (though they don't offer MRD testing in Eastern Canada). When I was diagnosed my hematologist told me on average patients my age treated in Canada with standard risk could expect about 15 years survival. Anyone care to share their experiences with a MM diagnosis at a (relatively) young age?
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Ktimb
Multiple Myeloma Discussion • July 10, 2024
Talquetamab Experience: Taste Loss & Low Hemoglobin?
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Hi all, My husband started Talquetamab + Dara in February. He was getting both, every two weeks. It has had so many awful side effects. He lost his taste in February. We were told once he went down to one a month with the Talquetamab, his taste would start to come back. He is into his second month getting the Talquetamab once a month and still has no taste. It’s also causing his hemoglobin to stay low and require shots of Procrit. Can anyone share experience of when their taste started to come back on Talquetamab and how long it took? Also, did you have any issues with low hemoglobin?
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Jb2022
Diffuse Large B Cell Lymphoma Discussion • July 8, 2024
Experiencing DLBCL in the Colon/Rectum?
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Looking for patients dealing with aggressive large Bcell lymphoma that has traveled to the colon and rectum. 2nd dose of RCHOP to be administered this week. Anyone experience this rare Dx? And if so, treatment success and failures. Thank you!
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Mamazolo
Polycythemia Vera Discussion • July 7, 2024
Starting a Northern CA Support Group
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Hello. My name is Laurie Terzolo and I have Polycythemia Vera. I live in Northern California in Alamo and I would like to start a local group for support. If anyone has an MPN and lives in the area please reach out.
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CuriousGeorgina
Multiple Myeloma Discussion • July 5, 2024
Radiation for Pain: How Long Until It Helps?
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How long before radiotherapy helps with bone pain? I've been fighting my insurance company to cover radiation for a large and very painful lytic lesion on my sternum, and perhaps naively assuming that the pain would start to lessen right away. But I had the first of five 3DCRT sessions yesterday, and the pain is significantly worse now. For those of you who had radiation to help with pain, how long did it start to work? Days, weeks? Did particular pain meds help more than others? I'm not supposed to apply ice or heat. Thanks in advance for anything you can remember.
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burgundyDragonfly
Multiple Myeloma Discussion • July 3, 2024
Celebrating a 10-Year Clinical Trial Success
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Clinical Trials work I just completed 124 months of a clinical trial. That’s 10 years 4 months. IT WORKED. I am in remission but staying on the drug Ninlaro to keep me in remission. God is so good to me as are my caregivers, Dr. Stockerl-Goldstein and his staff.