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

Did anybody have a bad reaction on their first injection of DARZALEX?

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.

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?

🚨 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

Has anyone had Tarvy as pre-treatment before having Car-T Cell therapy ? What was the experience like?

Follow up

I’m interested in information about skin changes that Ive been having. I have lambda light change myeloma that Ive described on another thread. Briefly, I was put ona regime that first started with REVlimid-Dara-dex. Monthly Zometa. Rash caused my oncologist to lower Rev dose. This didn’t help. Put on Pomalyst but shortly went out of remission. Am now on DkD; IVIG and Zometa monthly. During ALL of this (now about 27 weeks since first treatment) I continued to have a rash: small pimples (2-3 mm) with a zone of intense itching that is not visible on the skin surface, that can extend 2-3+ inches. When multiple pimples appear within proximity to others the “zones” overlap and thus the itching is very extensive yet unnoticeable except the dreaded and also itchy pimples. A “Vey” diagram would show the effects. Dermatologist did biopsy: results “severe hypersensitivity to medication.”Ive been treating it with Triamcinolone which offers brief relief. I have always had minor chronic itching since first treatment but a week ago it flared, again—as it does off and on regardless of the treatments, as described above. I see no correlation with any medication. About the time of the this rash flare I began to have “bruising” (what I’ve heard referred to as “liver spots” on older folks). These too began with my first thread but in minor ways. This week however looks a bit like I was beat up. Pictures of both attached. Any thoughts? Thanks! Bob