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gknautz
Multiple Myeloma Discussion • November 3
velcade stopping after 6 months
Hi, I did induction therapy with sarclisa, vel, dex, and rev then sct then started on Dara, vel,dex and 10mg relimid. I am coming up to 6 months of this and the doc is suggesting I stop the velcade after 6 months and continue the dara, dex and rel. Anyone else familiar with this?? no adverse effects.
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cejiri
Multiple Myeloma Discussion • November 3
Managing Kd Infusion Speed & Side Effects?
Hi everyone, I’m on Isa-Kd (isatuximab + carfilzomib + dex 20 mg only week 1) since Oct 2024. Stable VGPR, FLC suppressed. 4–5 weeks ago I shortened carfilzomib infusion (my idea to save time and reduce anxiety in box). Since then: Nausea G2 (vomited Thursday night) Low-grade feverish feeling G1 Headache G2 (taking paracetamol) Brain fog G2 (worse than my baseline chemo-brain) KO Friday/Saturday → missed sports which I try to do daily Labs just spiked: CRP 1.3 → 6.3 mg/L (+385 %) Triglycerides 212 → 479 mg/dL (+126 %) Questions for the group: Anyone on Isa-Kd / Kd with symptoms + CRP/TG spike after shortening infusion? 1) Did slowing back the infusion fix it? 2) Fenofibrate helped your TG? 3) Any pre-med tricks (montelukast, olanzapine) for delayed IRR? Thanks!
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ladeseck
General Discussion • November 3
Post stem cell concern
Our 31 year old daughter has a terrible gag reflex (has all of her life) and is really nervous about getting a feeding tube placed after her Stem cell transplant:-( She is afraid she is just going to throw-up the second they try to place it! She knows that this has been shown to allow her other organs to basically not work so hard and so she can just get the nutrition she needs, but is really freaking out about this! Any suggestions or recommendations? Anyone else have this issue?
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Bella
Multiple Myeloma Discussion • November 2
Myeloma Returns
Has anyone in this feed know of a situation after a successful Car T Cell Therapy (treatment date June 30, 1025), for several months and suddenly develop swollen masses developing in their neck, head and groin? This growth developed within 3 Weeks in October after 4 months of successful recovery?
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Spring2
Multiple Myeloma Discussion • November 1
Lower bone marrow % at diagnosis
I was wondering if any patients have been diagnosed with MM at a lower bone marrow percent eg 15% or less. My doctor said that bone marrow is notoriously patchy and can vary based on where it is taken from.
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Isaac
Multiple Myeloma Discussion • November 1
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
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
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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ChioOsuna
Acute Myeloid Leukemia Discussion • October 28
Taking Charge of AML Care: Free Virtual Event
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📣 Calling everyone on the Mountain & West Coast! 🌄🌊 Join us for a free virtual event: “From Diagnosis to Decisions: Taking Charge of Your AML Care” 🩺✨ TOMORROW Oct 29, 2025 at 2:00 PM EDT 🔗 Sign up now: https://healthtree.org/lymphoma/community/events/oct25-mountain-westcoast-aml-diagnosis-decisions Dr. Brian Jonas will walk us through the basics of AML, the importance of genetic testing, and how to advocate for the best care with your healthcare team. You’ll also be introduced to local resources, support organizations, and others in your area who understand what you're going through. 👉 Can’t make it live? No worries, we’ll send a recording to all registered participants.