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mat148
Multiple Myeloma Discussion • July 31, 2025
Benign Ethnic Neutropenia & Low Neutrophils?
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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.
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rudiflik
Multiple Myeloma Discussion • July 30, 2025
Managing Taste Changes On Talvey: Tips?
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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
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Geoffrey
Multiple Myeloma Discussion • July 30, 2025
Experiences With Carfilzomib + Dex Durability?
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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
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Mmm41214
Multiple Myeloma Discussion • July 30, 2025
Key Questions for My Pre-ASCT Dr. Visit
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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.
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tanPelican
Multiple Myeloma Discussion • July 29, 2025
My Story: Specialist Care & Managing Costs
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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.
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Aravinda1
Multiple Myeloma Discussion • July 29, 2025
Questioning End of Darzalex Treatment?
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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
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salmonCoyote
Multiple Myeloma Discussion • July 27, 2025
Experiencing Fatigue & Fogginess on Elotuzumab?
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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. :)
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Number11
Multiple Myeloma Discussion • July 26, 2025
HealthTree Events: Helpful for SMM/MGUS?
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For those with SMM or MGUS who’ve gone to one of the HealthTree events, have you found it helpful? I know they are open to all, but just wondering how much will be relevant to me 🤷🏽‍♀️ (I’m low risk SMM.. There’s a community event about 1.5 hrs away from me; I’m registered but now I’m second guessing 🤔)
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jjhutch959
Multiple Myeloma Discussion • July 25, 2025
Help Understanding These Lab Results?
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I am new to this and trying to learn. My M-spike is at 1.70 g/dL, my lambda light chain is 87.02 mg/L, Light chain ratio is .21, and my IgG level is at 1962 mg/dL. Has anyone found an easy way to explain this somewhere? Last visit in May my doctor would only say he was concerned. My blood draw this week did not improve and I met with him next week. I am, of course, worried.