MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: diagnosed 2 yrs ago. #26737
    simpsonshe
    Participant

    I am so glad to hear from someone who is going through some of the same thingsI am going through. The Aranesp feels like 20 bee stings. Have you triedtaking It in the stomach? I live in Ga. After my diagnosis and because I am only 57, I decided to go to the Mayo clinic in Jacksonville. This was to make sure I am up in all the new studies. You dont have to referred. I was feeling the same way you were. I would get the shot feel bad about a week and finally get an energy spurt then it was time for a new shot. I was going every 3 weeks here in Ga. Dr Faron at Mayo recommended I take the neupogen shot along with the aranesp every 2 weeks. It takes 3 months for the neupogen shot to get into your system to help. I must say the last 6 weeks of 2014 was the best I had felt since my diagnosis of 5/2013. I dont know what insurance you have but I would recommend taking the shot more often or discussing it with your oncologist. I am on the low scale of MDS RARS. I hope what I have relayed to you will help you. I have bouts of depression because I know I haveto live with this the rest of my life. My family is very supportive but only someone who has it knows how we feel. Prayers for you.

    in reply to: MDS Meds #26727
    simpsonshe
    Participant

    I have RARS MDS also. I have been taking aranesp for two years. In Aug of 2014my dr at the mayo clinic recommended I take a shot of neupogen along with my aranesp shot. It seems to help give me more energy. I take my shots every 2weeks. They seem to keem my hemo in the 10’s. It is not always a given though. I took my shots yesterday and was very tired today. I took a 4 hr nap.

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