anybody out there have Myelofibrosis?

Hi all, I’m Lucy, I was diagnosed with AML last year June ‘24, aged 38. I’m recovering from an allo stem cell transplant last November ‘24. Gratefully I should be cured (unless I relapse). I had to move from Bermuda to Boston, USA for treatment and I expect to be here til Nov when I celebrate my first re-birthday after SCT. My mother moved with me as I’d never want to go through this alone. It was a big adjustment leaving the rest of my family and friends (and cat!) as well as losing my job as my recovery took too long 🙄 I feel like my life is on pause and I forget that everyone else is carrying on as normal. Did others have complete changes in living arrangements or have to move far for treatment? Or relate to other aspects? Also any tips on hair regrowth? My hair has been growing for 6 months and missed the “cute chemo curls” memo - any advice on taming my “mangy rat met electric socket” look is welcomed!

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

Welcome to Dentalhut, your premier destination for transformative cosmetic dentistry in San Antonio, TX. We believe that a beautiful smile is the key to unlocking confidence, success, and overall well-being. Our team of expert cosmetic dentist San Antonio Tx is dedicated to helping you achieve the smile of your dreams through innovative, personalized dental solutions. Cosmetic dentistry is a specialized field of dental care that focuses on improving the appearance of your teeth, gums, and overall smile. It combines artistry with advanced dental techniques to create beautiful, natural-looking results. At Dentalhut, we offer a comprehensive range of cosmetic dental treatment services designed to address various aesthetic concerns and enhance your confidence. https://www.dentalhutsa.com/cosmetic-dentistry/

I have always been very active. For the first year+ of my diagnosis I struggled with fatigue issues to the point that it significantly impacted my quality of life, largely because of my inability to be outside playing and exercising. I have been taking Jakafi for about eight months and on my current dose for four months. I am almost back to my normal activity level! (Hooray!) What I’m wondering is, how long can I expect my current “normal” energy level to last? Anyone else been through this process? Thanks! John

Any new treatments known to relieve Symptoms of Myelofibrosis, such as Loss of appetite?