I was diagnosed in Dec. 24 with MDS following Myeloid NGS Pathology Report. This report identified I am positive for ASXL 1 & RUNx1 w/3 genetic variants. High risk per IPSS-M, WHO 5th Edition. I have had a 6 cycle Aranesp 500 mg a 2 wks. with insufficient response due to transfusion requirements. Currently receiving Vidaza 5of 6 cycles in with ongoing need for transfusions. Very concerned that current trt modalities are not sufficient & a likely transition to AML is in my future. That said, I’m interested in all the knowledge re: this potential phase of disease that I might face. Linda

Please note that the Multiple Myeloma Health Equity Fund with the Patient Advocate Fund is now open. Grants up to $7,500 for those who qualify. Please check this out at your earliest convenience as the fund runs out quickly. The link is: https://copays.org/funds/

Please note that the Multiple Myeloma Health Equity Fund with the Patient Advocate Fund is now open. Grants up to $7,500 for those who qualify. Please check this out at your earliest convenience as the fund runs out quickly. The link is: https://copays.org/funds/

My ratio for kappa Lambda has increased for the last two months. Now is at 2.5. I have been in remission for almost a year. Does this means it is coming back?

I’m on 10mg Revlimid and have developed eye sores. Has anyone else had this side effect?

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?