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?

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?

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.

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!

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

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

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

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!

As a result of treatment my platelets are too low. What can be done to help short of getting platelets.

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

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.

Do you know anything about financial care in Australia?

Let's go Black Myeloma patients show up to these fabulous events to be best educated on Multiple Myeloma.

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