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margarim
Multiple Myeloma Discussion • November 4, 2025
Joint pain and muscle tightness with Teclistamab
Has anyone experienced knee pain and swelling, rigid calf muscles and limited range of motion in the joints (knees)while on Teclistamab? I have had several tests to determine the root cause but everything has come back negative which is leading me to believe that it is a side effect of the medication.
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carryon4ever
Multiple Myeloma Discussion • November 4, 2025
Fasting
Hello, has anyone used fasting as a way to reduce your numbers, symptoms, what type of fasting did you do, length and outcome. Thank you.
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Ogamisa
Multiple Myeloma Discussion • November 4, 2025
Car-t and talvey
I had Car-T therapy in June of this year and PET scans in October showed the myeloma was still active. I have had one full dose of Talquetamab and will continue with a biweekly dosage of 90mg. I still have bone pains but due for a PET scan in a couple of weeks.
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gknautz
Multiple Myeloma Discussion • November 3, 2025
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, 2025
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, 2025
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, 2025
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, 2025
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, 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