I was diagnosed in January 2021 with high risk oglisecretory Lambda IgA mm. I was on the quad induction before ASCT in September, 2021. I’m currently on just Dex and FastPro. I have had 8 bone marrow biopsies with LOD of low numbers (no more than 24 and trending at 4-7). Although these seem to be good numbers, my IgK sequence A is what drs are following. This is the comment I have received from all 8 biopsies: “Given LOD per million (see page 3) and tracking behavior, it is possible that the presence of IgK Seq A in this sample may reflect “background “ rather than the initial clone of interest.” I guess this is uncommon. My bone marrow sample last time was over 4 million cells collected. Anyone else with this comment on their ClonoSEQ results? Thanks!

Hello there. I start Krypolis tommorow and was wondering if anyone experienced any of the bad side effects that are listed the moment you open up the website. Very concerned 😟 Thank you.

Does anyone else have macular edema and Multiple myeloma . Is there a connection?

I am a bit concerned that my flc ratio is slightly elevated (2.18) My doctor said insignificant until it’s 8 or higher but I’m concerned I’m headed to a relapse. My spep is normal with no m spike and my bmb from 2 weeks prior looked good. I have had stress and diarrhea. Should I be concerned?

I’m about to start the second round of Erantamab. So far, I’ve had high temperatures, an allergic reaction to Allopurinol, vaginal bleeding and overwhelming exhaustion. Do these symptoms subside as the myeloma cells are killed? At the moment, the treatment is worse than the disease. Any advice would be greatly appreciated. Thanks, Janine

My daughter is approaching 100 days post SCT and is still experiencing extreme fatigue and having difficulty breathing after just short walks. Is this to be expected?

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