My husband will have SCT day -2 on August 11. I will be his caregiver, but haven’t been told to “isolate” ahead of that time. Is that typical? I am starting to be concerned about that. Thank you!

Was diagnosed with lambda light chain in Dec 2023. Put on REVlimid 25 mg +Darafaspro+dexameth. Very shortly after starting Rev, broke out in patches of very itchy rash. Rev reduced to 10mg + Triamcinolone. Steroid cream. Rash resolved. Achieved remission. About 1 yr later rash returned and labs showed remission slipping. Rev replaced with Pomalyst 3mg. Rash becoming wide spread. Again Triamcinolone Dermatologist performed biopsies: result, Hypersensitivity to unspecified drug therapy. (I’m simultaneously on autoimmune rheumatoid arthritis meds). My oncologist (at a nationally renowned cancer university research center) wants me off rheumatoid meds before making myeloma changes. Am off 2 of the 4 rheumatoid meds and am crippling with pain in addition to the rash/itching! Suggestions? (PS As a former researcher myself, I’ve kept impeccable data, dates, drugs, & photos. It sure looks like the rash starts to flare 3-4 hrs after taking Pomalyst) Thanks!

After 10 years of of worsening anemia and a two year diagnosis of SMM, I was confirmed earlier this week of having Myeloma. There is so much good information on these web sites, but I get lost with all of the medicine names and acronyms. Other than googling every other sentence is there a good way to learn what all of this technical jargon is? Thanks

Just started Pomalyst and have an itchy scalp. Anybody else experiencing this.

Hello everyone. I am a multiple myeloma patient who underwent D-VRD therapy (4 cycles) and an autologous transplant. Despite achieving complete remission (CR), my neutrophil count did not increase after 6 months, so the doctors conducted a genetic test to check if I have Benign Ethnic Neutropenia (BEN) and if I lack the Duffy antigen, which was confirmed by the genetic test. I wanted to know if any of you have ever heard of this. Thank you.

Hello fellow MMers: Has anyone lost their taste w/ all food tasting oily and only items with texture like farro, English muffins, etc. helping a bit. I have had my second shot of Talvey after doing well during the 10 step up but got the „ no taste“side effect shortly thereafter. Anyone w/ similar experience and ideas what to eat and drink that is feasible and how long this ordeal will last. Thanks Rudi

I'm on my third agent, IV Carfilzomib + Dex (steriod) Been on it for 5 weeks. My doc says the length it will work is about 1 year. That's an average. Given my prior drugs lasted 2-6 weeks, it feels like the sword may fall at any time. Anyone have experience with this combo? GG

I was diagnosed in January w/ Lambda light chain myeloma. I also have +1q chromosomal abnormality. I'm currently on the Quad therapy and have a bone marrow test next month at Dana Farber. I only get a half hour with my Dr. during the whole day there of testing. What are the most important things to ask him? I know i have to decide whether or not to proceed with a stem cell transplant or wait it out, depending on the MRD results.

My response to anyone seeking advice on MM is to get to the best docs in your area!! I travel to Dana Farber (now Mass General Brigham) in Boston, where the docs there research and treatl only ONE type of malignancy: in my case,multiple myeloma Stage 3. Absolutely NO comparison with the local doc I see! I had a SCT in 2016 and am maintained on Revlimidcm 15 mg by mouth 21 days on and 7 days off. Fortunately, the cost of the drug has come down; after.soaring to $18k/month, it went generic and is now around $7k/month. Medicare has covered everything, with the exception of medication, for which I receive a grant from the LLS.

I was diagnosed with plasma blastic myeloma in 2022. I had bone marrow transplant in May 2023. I am on darzalex Faspro treatment and my oncologist plans to stop it in November. I have minimal side effects and want to continue treatment Any feedback will be appreciated