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belsthel
Multiple Myeloma Discussion • October 24, 2023
Sharing My Journey: Kidneys & No Treatment
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I was diagnosed with MM after I broke a vertebrae in an auto accident and another one after I slipped on a wet deck and hit my back. My first diagnosis was stage IIIB. My kidneys were shutting down and they debated whether I should go on dialysis or try to flush them with IVs of constant liquid. I was lucky because the liquids worked, but I still have elevated levels every time I have blood tests. There are treatments that I couldn't have because of my kidneys. I have been out of remission since 2020 but not on any treatment. My most recent blood work was last week and I won't have to go on treatment yet. I am also allergic to the treatment drug Revlimid and any drug in that class so not having treatment is a good thing.
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CarlosMunoz
Multiple Myeloma Discussion • October 24, 2023
Considering Zometa in Remission for Longevity?
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My hematologist has suggested while I'm taking Lenalidomide and am in remission, I might want to undergo two years of zoledronic acid (Zometa) once a month. I don't have lytic lesions or bone problems at the moment. He cited a study out of the UK that correlates Zometa with increased life expectancy. Any thoughts or experiences out there?
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khakiCougar
Multiple Myeloma Discussion • October 24, 2023
Experiences With Ozempic On MM Maintenance?
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Hi, This is my first post. i was diagnosed in July 2021. I went through SCT in Jan 2022 and I have been in remission. I am on maintenance therapy of Revlimid, Kyprolis, and a Steroid (40 mg iv). I was wondering if anyone else is taking Ozempic while on chemo meds? The steroids are adding on weight week after week and increasing my sugar levels. I started taking Oxempic last week and I am wondering if anyone has anything to share about taking it while having MM? Any negative issues that affected your MM care or remission status? Or positive? Thank you! Kathy
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Mdunovant5
Multiple Myeloma Discussion • October 24, 2023
Seeking a Coach to Help Navigate Resources
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Good Afternoon, I would like a Multiple Myeloma Coach to navigate through Multiple Myeloma information as well as financial resources such as co-pay assistance, transportation, etc. Thank you
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GoodDay
Multiple Myeloma Discussion • October 24, 2023
Seeking Integrative Options for Maintenance
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My husband is struggling with the maintenance therapy (REV, Dara). We are looking for a medical second opinion and want to work with a Hemoc that believes in Holistic treatment as a supplement to traditional medicine. No geographic preference, we can go anywhere. One contributor to this forum mentioned Acemannan (Aloe), Beets and Wild yam was prescribed as maintenance by her doctor, 7 years and counting with no relapse or other meds. Has anyone heard of this?
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CoachB
Multiple Myeloma Discussion • October 24, 2023
Getting SubQ IG Approved by Medicare After CAR-T?
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I have another question related to CAR-T. My understanding is that IVIG is being recommended for 12-18 months post infusion. Is anyone getting Subcutaneous IG approved and is that through Medicare Part D or B?
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Dherring
Multiple Myeloma Discussion • October 24, 2023
Will a Cold Affect PET Scan Results?
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I have had a head cold, congestion and swollen glands for a few days. I’m scheduled for my pet scan in a week. Will this cold mess with my results?
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CaraLee
Multiple Myeloma Discussion • October 21, 2023
Preparing for ASCT: Lessons Learned?
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I have my ASCT scheduled for November. I’m nervous. I know I am in good hands with my team at UNC Chapel Hill. I’ve read the literature about what to expect. I’m looking for lessons learned from those who have previous experience. Thanks!
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emeraldOyster
Multiple Myeloma Discussion • October 21, 2023
Choosing No SCT: Sharing Your Reasons?
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I was diagnosed with MM in May. Plasmacytoma, surgery, radiation, 10% plasma cells in bone marrow, standard risk. Blood chemistry is great; I feel great. My oncologist mentioned a stem cell transplant. From what I read almost everyone gets a SCT. What I want to know is whether there is anyone out there who has chosen NOT to get a SCT? Why did you make that decision?
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kealanisierra18
Multiple Myeloma Discussion • October 21, 2023
Experiencing Parkinson-like Symptoms Post-Carvykti?
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My husband recently went through CAR T therapy (Carvykti). He is about 4 months post-infusion. He spent 21 days in the hospital with some CRS and HLH. We are back in hospital as he seems to have developed Parkinson like symptoms. There is very little studied about this so attempting to see if anyone else has had a similar experience and what has become of it. Any insight would be greatly appreciated.