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.

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.

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

Common question…to stay in remission should I stop or stay on treatment. Join us to learn more. https://healthtree.org/myeloma/community/events/jul25-myeloma-treatment-remission

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. :)

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 🤔)

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.