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

Hello everyone my name is Debbie and I was diagnosed with AML November 23 of 2023 when I went in for was shortness of breath, thinking it had to do with my Parkinson’s disease and they tested me and informed me I had leukemia. Which was a big shock because I just battled breast cancer November 17 of 2017 and thought I was cancer free and I never have to deal with that ever again, but I was wrong. I was told I had six months to live. If I did not do a stem cell transplant and I wasn’t ready to let go. I have a wife. I’m very happy to be with so I said let’s do it even though I said I would never do chemo again, but my biggest accomplishment that I feel like I had control was when it came time that my hair was falling out, and I asked the people at city of Hope in Duarte, where I was staying to have the barber to come up and shave my my head. Because I was in control I was not gonna let cancer control every part of my life. This I had control of and it was very empowering to be able to make that decision and do myself as you can see I’m talking to you today so you know chemo works stem cell transplant workjust do what your oncologist says and the most important thing is to keep a smile on your face and keep positive and keep positive people around you so just so you know I’m here if you need to talk. Sincerely, Debbie best known as TNWARRIOR

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.

Hi, Hope all is going well. I had my SCT on July 08th, I’m +21 days. My question is “How long does the metallic taste last?” I cannot eat anything. Any help would be appreciated. Thank You Sal. L

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.