Share Your MDS Story

Hello all, I’m gonna get down to the nitty-gritty first. Feb. 26, 2025 I was diagnosed with myelodysplastic syndrome MDS with SF3B1, SRSF2, CSF3R, and SETBP1 mutations identified. But unfortunately it doesnt end there. i was also diagnosed with  Esophageal Intramucosal adenocarcinoma October 26, 2023 and again with Intramucosal Adenocarcinoma of the stomach June 26, 2025. Oh, I’m not finished yet. lol I have also been dealing with Squamous-cell carcinoma skin cancer since the age of 27. 

Of those cancers I have had and I’m guessing since the skin cancers have been numerous, around 15 surgeries. for the most part We have the Skin cancer in check with check up every 6 months. I’m happy to report that my Esophagus has been cancer free since Jan. 2024. The Stomach cancer was remover Sept. 8, 2025. So as of today I am cancer free with the exception of my MDS. And yea, unfortunately MDS cant be removed with a Scalpel. 

Now to bring you up to date on my MDS journey so far. Because of the CSF3R mutation I am at high risk. in the beginning stages from after diagnosis my WBC count was as high as 91,000. After a round of 2500 mg of hydroxyurea it finally dropped to a manageable count of 13,000. My RBC has been hovering around 2.75 and Hemoglobin around 9 and Platelets were 140. Oct. 8, 2025 and a roller coaster ride with my CBC My Oncologist changed my Med to 5 consecutive units of Dacogen Infusions per month. Fast forward to today and my Platelets dropped to 9.1, “Not Good”. After an infusion of platelets which was yesterday I have not gotten back with my Oncologist to see where we go from here. 

In closing I would like to leave you with these thoughts. Regardless of your circumstances you are the one driving. As someone once said, “YOU ARE THE CAPTIAN OF YOUR SHIP”! You hold the power to determine your outcome. Never ever give up hope. If I can pull thur the things I’ve been thur with the All Mighty Yahuah as my strength, so can you!!!