Your Feed

Filter by
See content from
Back to the latest
Avatar
violetLobster
Multiple Myeloma Discussion • July 13, 2024
My Journey to Remission and Healed Lesions
AI-generated title
I was diagnosed with MM in the beginning of 2020 (yup! right in the beginning of Covid pandemic!!) after months of pain in my bones...I quickly got connected to the MM service at Penn Medicine and started induction. I then moved to NYC and had my ASCT at Memorial Sloan Kettering...I stayed in remission for almost 2 years, had a slight rise in Kappas so was put on Daratumamab which quickly put me back in remission. I had to get off of Revlimid as it made my immunity so low I got pneumonia so my MM doc then put me on Velcade along with the Dara. I have been in a wonderful remission ever since and my PET showed all my lytic lesions were healed!! I am so blessed and my daughter is now pregnant and I am excited to become a strong and energetic Grandma!! I continue with my Qigong and yoga and long, long walks in the city!!! Blessings to everyone here!!
Avatar
anaGazana
Multiple Myeloma Discussion • July 10, 2024
Sharing IVIG Experiences & Zyrtec Info?
AI-generated title
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
Avatar
construKction
Multiple Myeloma Discussion • July 10, 2024
Diagnosed Young: Sharing Experiences?
AI-generated title
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?
Avatar
Ktimb
Multiple Myeloma Discussion • July 10, 2024
Talquetamab Experience: Taste Loss & Low Hemoglobin?
AI-generated title
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?
Avatar
Jb2022
Diffuse Large B Cell Lymphoma Discussion • July 8, 2024
Experiencing DLBCL in the Colon/Rectum?
AI-generated title
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!