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Sounds like you are doing well. I have mild MDS since 2012 found on routine blood work. My numbers are as follows:
I have been asymptomatic and living a normal life. I walk daily and try to eat healthy. I am thankful for each day, and I try not to think to far into the future. My oncologist thinks I will become symptomatic next May. I hope he is wrong, but we’ll see. Hope this helps and you don’t feel alone in this
I have no symptoms at all, just abnormal CBC.
I understand your anxiety regards MDS. I have had some on and off. I am currently taking Celexa for periods of anxiety and it seems to help. Sincerely, Rod
I have been diagnosed August 2020. I have had WBC 2.9 and Platelet 147 and Hgb 13.5 since 2012, but my regular doctor never referred me to an oncologist. I got a new general practitioner in 2019 and she referred me to my local oncologist here in Norwalk, Ohio. He saw me in August of 2020 and gave me the news of my mds diagnosis. I currently see Dr. Tim Adamowicz in Norwalk, Ohio. I am on watch and wait for now. He thinks I will become symptomatic in the next 1.5 years, but if my abc holds longer so be it. I am not yet going for center of excellence which is Cleveland clinic until my future changes more. I hope this gives you encouragement and God be with you all. Sincerely, Rod
My oncologist says mild mds patients can live for decades. I know it is difficult to know for sure, but I am trusting in the God who made all things including me to sustain me through this disease. I have to remind myself that I am only in control of my attitude and not my health. We can pray for each other Joe. Sincerely, Rod
Thanks for sharing Rosalyn. Glad the transplant worked for 18 years, but sad to hear of the return. Hope the approval for Luspatercept works. God bless RodNovember 6, 2021 at 11:37 pm in reply to: People who were diagnosed with low risk MDS six years ago or more #56388
I have had abnormal WBC and Platelets for 10 years now. Only recently has my HGB fallen some to 11.9, but a recent draw showed 13.1. My oncologist thinks I will become symptomatic within 1.5-2 years. I hope this gives you encouragement Joe.
Thanks Lisa for your input
Thanks Kathleen and Cliff. I appreciate your guidance. Glad to hear there is help down the line when I begin treatment.
Thanks Sue for sharing your story. My oncologist is not a big fan of transplants, but when I get to the point where I feel I need a second option I will go to Cleveland Clinic. I have been asymptomatic for going on ten years but recently my Hb is beginning to decrease. I am learning to not take life for granted.
Michael, are you on any special diet? Roderick McCune
Would you go through transplant again? Was it tough? How old were you at the time of transplant?
Glad to hear of your transplant success. I have mild mds so for now no transplant. I am on watch and wait till then. My oncologist predicts I will become symptomatic in 1-2 years as Hb slowly dropping. I have included transplant as a future hope for cure in case things get worse. My problem is age is not on my side as I am 70 currently so no telling how old I would be when my symptoms become worse.
I think your transplant story is encouraging and I hope it gives others hope. Thanks for sharing. Rod
Thanks Sue for your help on this
Last question Richard. What does LLS refer too?