Hello I finished my 10 Day step up procedure required if you are prescribed TALVEY. 8 days in the hospital ok, on the ninth day dry mouth and no taste. It has been 3 month now. I am miserable and very disappointed. Any thoughts? Thanks

Have been on Pomalyst for 5 years, since remission. My light chains are going up. MM specialist is recommending Car T-cell therapy. I am 78 years old. The odds sound good, but how bad is it to go through?

Has anyone received a kidney transplant after an ASCT? How long did you have to wait? Is anyone on dialysis as a result of the mm?

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My husband had chemotherapy five days 24 hours. He's now having problems getting his blood count up and platelets up have anyone else experienced this

Here is a new standard of care for low risk MDS (CMML is an MDS as well as MNP type disease). This is the text from the Haymarket Medical Network and Hematology Advisor Institute. It is a copy/paste of an educational course for medical professionals, but just knowing this can let those with this issue or similar ask questions to their own provider. "Paradigm Shift in Lower-Risk MDS: New Standard of Care: "Drs. Amer Zeidan, from Yale University School of Medicine, and David L. Grinblatt, from the University of Chicago School of Medicine, in collaboration with The Blood Project, discuss practice-changing data for lower-risk MDS-associated anemia. Although more than 80% of patients with MDS have anemia, only 30% to 40% respond to conventional first-line therapy with an erythropoiesis-stimulating agent, and the duration of response is typically limited. Red blood cell transfusions are another option, but transfusion dependence poses significant emotional and physical burdens and is associated with iron overload and decreased survival. New therapeutic options are now approved, and Drs. Zeidan and Grinblatt examine the evidence and the real-world application to improve outcomes and patients’ quality of life." I hope this helps some. I get these as well as new information of test and trial progress through the Haymarket Network which lets patients sign up at no cost and have daily newsletters where you can choose the ones that are specific/related to your case. I am a retired professional researcher, 40+ years in architectural specifications with over 400 projects nationwide, formerly with a top 30 firm in Multifamily Residential and Commercial Architecture. Apparently understanding the ability to research literally every material and system and coordinating all consultants on a major architectural project lends itself well to researching most anything. After I found this site, I mentioned it to my primary CMML doctor at Moffitt in Tampa asking if it was a good resource. She replied that apparently we read the same resources and that she gets their newsletters every day. Here is a link to their signup page: https://www.hematologyadvisor.com/?utm_source=eloqua&utm_medium=email&utm_campaign=NWLTR_HEM_UPDT_SS-LIC-LAS-DI-10001_090925_AF&hmemail=&sha256email=9ed121aab947a9e27078b023be5ef3ae52f8ddb825a2aed984969e9ff45cc578&hmsubid=&nid=&elqtrack=True

I have been receiving Kyprolis infusions on day 1 and day 15, and a Dara Faspro injection on day 15 of treatment for the past three and a half years. On Thursday of last week I received both Kyprolis and Dara. Three days after the treatment I woke up with a severe case of hives. This has not happened previously. I do take Claritin the day before, day of, and day after treatment and 4 mg. of Dex the day of treatment. Has anyone experienced this?

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Many patients with MM In UK, Europe and USA are using Low-dose naltrexone (LDN) has been used in integrative and functional medicine. It helps with energy, with pain and helps the immune system. Has anyone used Naltrexone? I am curious if this really helps. .