Share Your MDS Story

   My name is Mercedes. I’m 58 years old and I’m a retired Certified Nurse Midwife & former Army nurse. I had fatigue for no apparent reason starting in 2016 that just kept getting worse …I had physical evaluations and labs done many times over the years. All normal other than a slightly elevated MCV which I attributed to living at 7,000 ft and my Hemoglobin slowly dropping from high normal to low normal and finally dropping into the anemic range in 2019. Long story short I ended up with a bone marrow biopsy & finally found the cause of my fatigue…low risk multilineal myelodysplastic syndrome with SF3B1 & ASXL1 mutations & 5% blast count. My husband Matthew and I were devastated. I immediately started doing a deep dive researching it. Knowledge helps me cope  & gives me a sense of control over the MDS. The MDS foundation site was helpful & informative. I found an amazing doctor that specialized in MDS at a COE in Denver, Colorado (Daniel Pollyea). My whole team at the Anschutz Blood and Bone Marrow Cancer Center, Univ of Colorado, has been nothing short of amazing. Everyone really listened to me, patiently answered my multitude of questions, and incorporated my wants & needs into my care. They recognized that as a nurse practitioner I had a good understanding of my disease and treatment options & they encouraged me make the decisions about my care. It really empowed me not to feel helpless. The transplant Doctor Gutman even took the time to see me when I was not even in the ballpark for an SCT to answer my questions and at my request test my brothers to see if they would be a match when the time came. My younger brother was a perfect match! You can’t imagine how much stress and worry it relieved knowing that!   I was on watch and wait until early 2022 at which time I tried Reblozyl to increase my Hgb. It seemed to be helping, but then on the 3rd dose I ended up in the ER ruling out heart attach & stroke…which I did not have, my symptoms were just an intense side effect of the Reblozyl. I decided to stop it & ended up transfusion dependent. By that time the fatigue was so bad I couldn’t do much but move from my bed in the morning, to the couch all day and back to bed. It was so frustrating because I was normally an “energizer bunny”. I worked hard on giving myself grace and permission to read & be on line all day as there wasn’t much else I could do. I found a zoom support group out of Chicago and a facebook support group for low & high risk MDS. Hearing other people’s experiences and how they coped was really helpful. I still belong to those groups. I hope I can give back the encouragement I got!  Dr Pollyea discussed trying Inqovi with us VS just continuing blood transfusions. I asked “What about going ahead with the Stem Cell Transplant even though I’m only borderline moderate risk?” He thought about it and said “It’s very agressive, but not unreasonable.” I saw the transplant doctor again to discuss it and he said the same. They both told us we had options (Inqovi, blood transfusions or SCT) and they would support our decision as I was the one having to live with this, not them.           After a lot of introspection and tons more questions 😀, we chose to proceed with the SCT “early” while I was still “young” and otherwise healthy & had a perfectly matched sibling donor. The scenario for a successful transplant was optimal and the odds of success would just keep dropping the sicker I got.      Long story short…I had my transplant in June of 2023 at Anschutz Campus of The University of Colorado. It couldn’t have gone better, it was almost easy. I feel guilty when I say that as many people in my support groups have had horrible experiences and even died. But truly once they let me out of the hospital I usually only had 1-2 “down” days a week and on the other days I walked 1-2 miles a day in the early morning with my amazingly understanding & supportive husband Matthew, whom I feel so lucky to have by my side❤️. For the most part I relaxed most of the day doing crafts and had minimal issues like mild skin GVHD on my upper body for 2 weeks and no nausea but random projectile vomiting. That was an experience! I got about a 6 second warning…we had blue vomit bags every 6 feet in the house 🤣.   …Here I am 2 years and 2 months later and I have my life back!!! My bone marrow biopsies are cancer free!! It took 1 1/2 yrs to get back to my old energizer bunny self but it was totally worth it! My Hgb ranges 12-14, it’s literally a miracle. My platelets are mildly low around 100 and my White cells range 2.5-3.5…apparently this is just the “new me”. I just have to avoid being around sick people (so I can’t go back to my midwifery job), but that’s ok, I don’t let it stop me from living my life. I appreciate every single day! Every so often I stop and tell Matthew…”look at me! I can run up the stairs! I can dance! I’m the old me again!!” He hugs me and tells me he’s so glad to have me back too. I’ve even taken up throwing pottery and I love it. Plus I have this awsome curly hair now!    Yeah chemo! I can’t thank the people in my life enough for how amazingly supportive & understanding everyone has been. Special thanks to my husband Matthew, my “little” brother aka “the donor” (he calls me “his secondary blood receptacle” 🤣) and my best friends for taking such good care of me and my entire amazing health care team from my Family Practice Doctor (Robert Vogt) who believed me when I said something was wrong & never gave up trying to figure out what it was to my Oncologist & Transplant doctor, all the nurses, techs, PA’s & Nurse practitioners …you gave me my life back and I am forever grateful!!!            

    Educate yourself on your disease & your treatment options. Don’t focus on the “how long do I have” statistics, they are based on old data & we have more & better treatment options now. Go to reliable sources of information like the MDS foundation. Advocate for yourself!   No one knows what you need better than you. If you don’t understand something, keep asking questions until you do. Keep a notebook with all of your research, labs and treatments in it. Remember if you are low risk…it doesn’t mean you aren’t sick, give yourself grace, the fatigue is real even if “you don’t look like you have cancer” 🙄. Join an MDS support group & participate in it. Live your life to the fullest, enjoy the little things and most importantly never give up! New treatments are just around the corner!