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FulltimePoppy
Multiple Myeloma Discussion • October 25
Rising IgA and Diarrhea in Remission?
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I’m currently in remission. MRD- Out of nowhere my IGA went from non measurable to 127. A high jump. All my test show remission. In fact I just got all my bi yearly test. Bone marrow negative and MRIs all clear. The only thing I can point to is I have had non stop diarrhea. In fact severe! Could this impact IGA?
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XimenaG • Admin
Multiple Myeloma Discussion • October 24
Positive Treatment News: Blenrep Approval
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🚨 Recent News in Myeloma Treatment! 🚨 The U.S. FDA has approved Blenrep (belantamab mafodotin-blmf) in combination with Velcade (bortezomib) and dexamethasone (BVd) for relapsed or refractory multiple myeloma. ✨ Based on the DREAMM-7 trial, this new treatment option showed a 51% lower risk of death and extended progression-free survival to 31.3 months compared to 10.4 months with standard care. This approval gives new hope to patients who have received at least two prior lines of therapy. 💪 📌 Learn more about this important advancement 👉 https://healthtree.org/myeloma/community/articles/blenrep-fda-approval?utm_source=social_media&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general
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Iliana • Admin
Acute Myeloid Leukemia Discussion • October 24
Share Your Experience: Paid AML Focus Group
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Hi! We are seeking AML patients to participate in a paid, 2.5-hour virtual focus group scheduled for mid-November. Eligibility criteria: Diagnosed within the last year No treatment or receiving low-dose chemotherapy such as Ven+AZA or Decitabine Participants will receive compensation for their time and feedback. If you are interested, please fill out this form: https://forms.gle/WJrcwM7ALuoWKuN36
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BobH1
Multiple Myeloma Discussion • October 23
Follow up
Follow up
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BobH1
Multiple Myeloma Discussion • October 23
Experiencing Persistent Rash and Bruising?
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I’m interested in information about skin changes that Ive been having. I have lambda light change myeloma that Ive described on another thread. Briefly, I was put ona regime that first started with REVlimid-Dara-dex. Monthly Zometa. Rash caused my oncologist to lower Rev dose. This didn’t help. Put on Pomalyst but shortly went out of remission. Am now on DkD; IVIG and Zometa monthly. During ALL of this (now about 27 weeks since first treatment) I continued to have a rash: small pimples (2-3 mm) with a zone of intense itching that is not visible on the skin surface, that can extend 2-3+ inches. When multiple pimples appear within proximity to others the “zones” overlap and thus the itching is very extensive yet unnoticeable except the dreaded and also itchy pimples. A “Vey” diagram would show the effects. Dermatologist did biopsy: results “severe hypersensitivity to medication.”Ive been treating it with Triamcinolone which offers brief relief. I have always had minor chronic itching since first treatment but a week ago it flared, again—as it does off and on regardless of the treatments, as described above. I see no correlation with any medication. About the time of the this rash flare I began to have “bruising” (what I’ve heard referred to as “liver spots” on older folks). These too began with my first thread but in minor ways. This week however looks a bit like I was beat up. Pictures of both attached. Any thoughts? Thanks! Bob
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XimenaG • Admin
Multiple Myeloma Discussion • October 23
Discussing ASCO & EHA 2025 Myeloma Highlights
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🎧 New Podcast Alert! In this plain-language episode, we break down the most important highlights from ASCO 2025 and EHA 2025, making complex myeloma updates easier to understand. 🩸 Joined by an expert patient and a myeloma specialist, we cover: MRD-driven strategies Novel immunotherapies Supportive care Precision medicine & AI MRD negativity is becoming a key therapeutic goal, and supportive, personalized care continues to improve outcomes and quality of life for people living with multiple myeloma. 🎙️ Listen now and stay informed! 👉https://open.spotify.com/episode/5u4tj34rjNMzVUdfn6Cln3
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Kimberlyin813
Multiple Myeloma Discussion • October 23
Concerned About SMM Progression Signs?
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I have SMM , diagnosed Aug 2024 Last PET and blood work was good No tumors / lesions / blood stable IGA still very high IGG low month ago But last week or so fatigue has been extreme , bone pain everywhere and waking up with bruises everywhere No falls or reasons for the bruises and vision been blurry and had migraines a couple days . But overall the fatigue is terrible . Should I be concerned of progression ? Anyone else start with Smoldering that progressed to MM that can tell me signs to be aware of ? Thank you
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Brina425
Multiple Myeloma Discussion • October 22
Sharing Our Success Story: SCT & CAR-T Remission
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Hello everyone and thank you for having me, in this group my husband, was diagnosed with multiple myeloma, but he’s doing really well now he has had a stem cell transplant and Car-T transplant and is now in remission. I guess we can say but he’s doing great and I thank God every day for his journey.
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MichaelEEvans123
Multiple Myeloma Discussion • October 22
Managing Immunity Post-CAR-T: My Shingles Experience
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I’m in a similar situation with Igg numbers particularly low after CAR-T on 12/31/2024. I’ve been taking a monthly IVIG treatment for 6 months now and been illness-free until last week when I contracted Shingles (yes, it sucks and recommend avoiding it if you can). I generally avoid people/crowds out of habit but have been slipping on the mask usage at my typical haunts. Michael
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XimenaG • Admin
Multiple Myeloma Discussion • October 22
Honoring Caregivers: Share Your Story
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Behind every patient’s fight, there’s a caregiver whose love and strength light the way. 💛 This November, we want to honor you through our “Heart Behind the Care” campaign. If you’re ready to share your story, to inspire, comfort, and bring hope to others, please email ximena@healthtree.org Your story will be shared on HealthTree to celebrate and uplift the caregiver community. Your voice matters. Your story matters. Let’s celebrate caregivers together. TOGETHER WE CARE. TOGETHER WE CURE
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BillCO
Multiple Myeloma Discussion • October 21
Experiencing Rib Pain After Kyphoplasty?
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I had a kyphoplasty procedure about 2 weeks ago to “fix” a compression fracture in my L4 vertebra. The intense pain from the fracture was relieved immediately after the procedure. What caught me unaware was the excruciating pain throughout my entire rib cage which started the next day and continues 2 weeks later. I still need to take OxyContin extended release pills to manage the pain because acetaminophen doesn’t touch it. Has anyone else had this outcome after a kyphoplasty and how long does it take to go away? Thanks for any helpful suggestions in advance!