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!

Hi I have been recently diagnosed with CMML-2 and possibly A T-cell leukemia. I am looking for support and others take on their experience with this disease. I am not being treated at this time I have been told that it is not aggressive. I really don’t understand the criteria but I am hoping for more information from my new Dr. soon. I feel horrible most days with significant fatigue and bone pain in my thighs and lower back. I have low low neutrophils, low platelets, WBC, and RBC. I also have high MPV and MO. I only have 1 mutation which is a high % TET2. Due to this I have been placed on wait and watch. I have a significant amount of anxiety. If you don’t mind sharing your story I am very interested in learning all I can. 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.

Just diagnosed with PV , not sure what expect

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.

I have cell lymphoma. I was wondering if anyone else out there has excessive pain. I have most of the pain on my skin lesions. I was wondering what other people do to subside there pain

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

Hi everyone. I was diagnosed in June 2022, along with my first bout of skin cancer, which required rebuilding my nose after taking it down to the underlying cartilage. After 7+3, FLAG, two rounds of Aza/Ven and consolidations, I finally got my bone marrow transplant in February 2023. I have adverse mutations, but have already outlived the probabilities. I have severe cGVHD of the gut, but Rezurock is taking care of it. I've had additional skin cancers, and just about to start treatment for an aggressive Gleason 8 case of prostate cancer. So my medical story is mostly about dealing with cGVHD and secondary malignancies. But I'm happy to be here, very engaged in volunteer work, with family and with great friends. My wife Pat is the most amazing person of all to put up with all of this over time and to love me despite sharing this unanticipated journey. Where the path leads, we must follow. And now yet another new twist. I'm very lucky to have an incredible medical team at Duke Health who talk to each other, and to be blessed by resiliency. I love being a coach for HealthTree who have figured prominently not only in the work that we do, but significantly with some of the people that I've coached. I love playing piano for blood cancer patients at the hospital and for hospice. Kudos to everyone who deals in any way with this remarkable AML journey. We are fellow Travelers.

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