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kenlevy
Multiple Myeloma Discussion • October 31
CPR Fund for MM Now Open
CPR Fund Now Open: Multiple Myeloma The specific eligibility criteria for the Multiple Myeloma fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies. PAF on Facebook CPR Website PAF YouTube Channel Copyright © 2025 Patient Advocate Foundation, All rights reserved. You signed up for this list in order to receive messages, newsletters, event announcements and other relevant information from Patient Advocate Foundation. Our mailing address is: Patient Advocate Foundation 421 Butler Farm Road Hampton, VA 23666
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Iliana • Admin
Multiple Myeloma Discussion • October 31
Black Health Matters Summit in Charlotte
Join us on Saturday, November 15, for the @BlackHealthMatters Fall Health Summit & Expo! Gain invaluable insights from healthcare providers, celebrities, and wellness experts on key health topics impacting the Black community. Don’t miss out, learn more here: https://blackhealthmatters.com/event/bhm-fall-2025-health-summit-expo-in-charlotte-2/ #BlackHealthMatters #BHMinCharlotte #BlackHealthStartsHere
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BobH1
Multiple Myeloma Discussion • October 31
Faced with Choices. Any experiences with these options Will be Appreciated
I have been on multiple regimes since January 2024. First Rev+dara+dex. I was told I went into remission very quickly. But a ferocious rash that was not able to be controlled caused my oncologist to replace Rev with Pomalyst (still with dara+dex), and I came out of remission. Next thread was Dkd (+ IVIG due to 3 infections in 6 weeks+Zometa). But this has not slowed the progression. On Tuesday 10/28, meeting with my oncologist, she said w/ my comorbidities (pacemaker; autoimmune rheumatoid arthritis (AIRA), spinal stenosis, extensive distribution of FDG avid lytic osseous lesions both axial and appendicular, esp. clivus, calvarium, hip, etc, and progression of Myeloma (Lambda light chain) she would like me to consider electing a new treatment. I was provided with MMF publications+Oncolink data sheets, and we went over in great (overwhelming) detail the risks and benefits of the three she was suggesting. She also looked for clinic trials or studies to enroll in, however meds for AIRA (which is well under control) ruled out all but one (2a below). So, I'm faced with making a pick, based on how much risk I am wiling to take: 1) Staying on DkD and adding Cytoxan IV once weekly - outpatient; monitor 2) A bispecific, Teclistamab, IV weekly +IVIG; preferred as inpatient 10 days (off the shelf; could start soon) 2a) Clinical Trial: after 6 months therapy STOP drug and monitor 3) CAR-T therapy (Carvykti); Collect T-cells; 6-8 wks manufacturing; Bridging therapy; 3 days chemo outpatient; Cyclophosphamide+fludarabine (FC IV); THEN CAR-T infusion; mandatory 10 days inpatient (long period before CAR-T, but she thinks I have the time if I decide soon to move forward with this. [Please note: these are my recollections of the conversation and may not be precisely accurate] My mind is spinning as I look at Risk cf Benefits of each! Thoughts? Help? Questions to ask her at next visit 11/14? Thanks!
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Graydc
Multiple Myeloma Discussion • October 29
Platelets
As a result of treatment my platelets are too low. What can be done to help short of getting platelets.
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Marga
Multiple Myeloma Discussion • October 29
M protein, when is it considered a relapse?
Hi there, My husband was diagnosed with MM stage 3 in 2023, had standard protocol treatment until summer of last year when he had a SCT. He started maintenance treatment a year ago. His labs after SCT, specifically M protein were in the range of 0.1 and 0.04. This year the labs have been detected but not quantified until his last one. It’s now up to 0.04 g/dL. It’s the first spike and we are waiting to hear from his doctor if he needs to have his labs done again or any changes in treatment. Is this considered a relapse? How many times and/or increase on M protein quantity is considered relapse? Thanks, Margarita
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DIahanna • Admin
Multiple Myeloma Discussion • October 29
ACA
For those of you who are on and Affordable/Obama Care/Exchange Insurance plan, be aware. The premiums are going up 27%'. This does not include the amount you may experience if the subsidies expire on Nov 1st.
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Texassuzy
Multiple Myeloma Discussion • October 27
Navigating Medicare Part D in Texas?
AI-generated title
Advice Please:) I’m in Texas and on employer sponsored plan BCBSTX ,receiving myeloma care at UT Southwestern. I read recently that 2026 BCBS will no longer contract with UTSW. 1. Anyone on Medicare having significant problems getting their medication covered? 2. Anyone have a part D Tx Medicare plan they recommend? I’m in N Texas so I understand insurance providers use zip code for plans. I would really appreciate any/all advice. I will reach out to insurance providers as well as our sw liaison at the medical center. Thank you so much! Suzy
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Debbie
Multiple Myeloma Discussion • October 25
Understanding Lab Results For Relapse?
AI-generated title
What on my blood test do I look at to check if myeloma is present again. I don’t see my Dr until mext week and I am little anxious and want to learn which number to look at. Thank yo in sdvance for any help.
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FulltimePoppy
Multiple Myeloma Discussion • October 25
Rising IgA and Diarrhea in Remission?
AI-generated title
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
AI-generated title
🚨 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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BobH1
Multiple Myeloma Discussion • October 23
Follow up
Follow up