Your Feed

Filter by
See content from
Back to the latest
Avatar
Silverado13
Multiple Myeloma Discussion • August 1, 2025
Understanding Myeloma Jargon: Any Tips?
AI-generated title
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
Avatar
mat148
Multiple Myeloma Discussion • July 31, 2025
Benign Ethnic Neutropenia & Low Neutrophils?
AI-generated title
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.
Avatar
rudiflik
Multiple Myeloma Discussion • July 30, 2025
Managing Taste Changes On Talvey: Tips?
AI-generated title
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
Avatar
Geoffrey
Multiple Myeloma Discussion • July 30, 2025
Experiences With Carfilzomib + Dex Durability?
AI-generated title
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
Avatar
Mmm41214
Multiple Myeloma Discussion • July 30, 2025
Key Questions for My Pre-ASCT Dr. Visit
AI-generated title
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.
Avatar
tanPelican
Multiple Myeloma Discussion • July 29, 2025
My Story: Specialist Care & Managing Costs
AI-generated title
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.
Avatar
Aravinda1
Multiple Myeloma Discussion • July 29, 2025
Questioning End of Darzalex Treatment?
AI-generated title
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
Avatar
salmonCoyote
Multiple Myeloma Discussion • July 27, 2025
Experiencing Fatigue & Fogginess on Elotuzumab?
AI-generated title
I had a question. I was diagnosed with IGG high risk Myeloma about 5 years ago and went through SCT about 3 years ago. I have refractory disease and never quite got a fully remission. Was on Rev, Velcade and Dex afterwards and stayed fairly stable. My M protein has begun to spike some recently and treatment was changed to Elotuzumab Infusions(weekly for 8 weeks and then monthly) and Pomalyst (3 mgs) for 21 days a month. I am experiencing a fair amount of fatigue and mental fogginess at times-especially after Elotuzumab Infusions. My oncologist stated she has never noticed fogginess in her patients. Although, it is listed as a side effect. Just curious-if anyone out there has had some of these treatments and your experiences with any of these treatments. Thanks so much. :)