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Isaac
Multiple Myeloma Discussion • November 1, 2025
Blenrep (belantamab mafodotin)
Hello, I just learned that the FDA just approved Blenrep (belantamab mafodotin) on 23 October 2025. I understand the most common side effects is ocular toxicity/vision problems. Has anyone taken this drug yet, and what has your experience been? I'm considering asking my oncologist to put me on it instead of Kyprolis, since I'd rather have vision problems than heart problems. I appreciate your response in advance!
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kenlevy
Multiple Myeloma Discussion • October 31, 2025
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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kenlevy
Multiple Myeloma Discussion • October 31, 2025
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, 2025
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, 2025
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, 2025
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, 2025
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, 2025
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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sharper
Chronic Lymphocytic Leukemia Discussion • October 28, 2025
My story
I am 65 years old now but was diagnosed 7 yrs ago with Wait and Watch. Since then my spleen is enlarged, I have swollen lymph nodes in few places, WBC is 41,000 with low platelets and low RBC. Still no treatment at this time but I do have IVIG infusions every 3 months. I know treatment may be on the horizon but until then just trying to live healthy.
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Michael
Chronic Lymphocytic Leukemia Discussion • October 27, 2025
High WBC & Spleen: Is It Time to Treat?
AI-generated title
I have a 20 year history of cll, thus far just watching. No fatigue or adenopathy to speak of. WBC now up to 200,000. Doctor wants to treat me.Only other factor is my spleen is 17.5 cm. I feel fine. Is the white count or splenic size enough reason to treat?
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Texassuzy
Multiple Myeloma Discussion • October 27, 2025
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