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ArlMP
Multiple Myeloma Discussion • November 14, 2023
Pelvic Radiation for Plasmacytoma: Experiences?
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Dx with a plasmacytoma this year. Started with severe right hamstring pain. Plasmacytoma in right sacral area. Currently on Darzalex. Complete workup done in October; BMB, PetScan, and full body MRI. BMB pathological normal. FISH study normal. PetScan no activity or other tumors. MRI shiwed a small increase in size on plasmocytoma. Discussed the possibility of changing treatment which would be the biospecific's. Dr didn't want to radiate the pelvic region due to the area being a major source of blood cell production. I didn't want to utilize the Teclistamab yet since the Darzalex is keeping the myeloma numbers down but in not in shrinking the plasmacytoma. Discussed the possible of doing a radiogy-guided radiation to decrease the area of exposure. Has anyone else had the pelvic region radiated due to a plastic and what was the outcome?
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rudiflik
Multiple Myeloma Discussion • November 11, 2023
Sharing a Positive DPD Treatment Experience
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Good Morning and Happy Thanksgiving to all. 83 years old, widowed. I was diagnosed with MM in late 2019. For 1 year, I was on VLD, then for two years on KLD and now on DPD, Dexamethasone ( 20mg on day of injection) Pomalidomide, 2 MG and Darzalex Fast Pro. Can't believe how much better I feel with this treatment on the eve of injection and after a good night sleep. Labs are also trending in the right direction. If I can be of help to anyone please contact me.
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GraceandMercy52
Multiple Myeloma Discussion • November 10, 2023
My Journey: Seeking Connection & Advocacy Advice
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Hi everyone my name is Amy salmon I’m 52 yrs old and I was diagnosed in in August of 2018! I was Mis-Diagnosed for two years….. I went to UPMC and kept there for almost a year and was finally diagnosed with MM! I say finally cause I finally had some relief! I was put on Revlimid, Dex, and aspirin. This has been my go to since I heard about this disease. It’s very hard at times dealing with my teeth falling out and other things that I can’t remember. So forgive me please!! I am in remission now for 5 years and I thank God for it and my doctors at UPMC! I really want to help advocate for MM in my community and city! (Pittsburgh pa) but don’t know where to even begin. I want to hook up with people from here As well! I don’t know what anything means on my lab work. Idk, it’s hard when you are black in a white community! No offense anyone. Didn’t mean that in a derogatory way honestly. I have no friends really but 2! It’s a lonely battle for me. I do have my baby girl she’s 24 by my side but I want her to live her life! We butt heads a lot. She is my caregiver! lol whew! IM-a-GINE-THAT! Hahaha love her to the MOON AND BACK THOUDH AND AM SO APPRECIATIVE OF ALL THAT SHE HAS DONE for ME! Well please if anyone wants to talk please reach out! Thank you!
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DIahanna • Admin
Multiple Myeloma Discussion • November 8, 2023
Tip: Review Your Medicare Advantage Coverage
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Everyone need to review their health insurance. If you are a Medicare enrollee and have Medicare Advantage, be aware that some providers are dropping Medicare Advantage plans. You need to call and make sure you will be covered and still in-network. Don't forget to review your prescription plan as well.
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slhenk9
Multiple Myeloma Discussion • November 8, 2023
Experiencing Swallowing Issues?
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has anyone had issues with swallowing....it seems my husband has had a change but is dealing with it....did have an endoscopy and that was good, and they did try to stretch his throat but it didn't help much....just wondering how many have this issue.
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Dherring
Multiple Myeloma Discussion • November 8, 2023
Understanding Genetic Results and Risk?
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This is from my genetic page. As this disease progresses could it change or does it remain consent? Does this help with defining my risk level. Thanks in advance.