MDS is a bone marrow failure disorder

Welcome to the MDS Patient Message Board Post New Thread

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.

Need others

This topic contains 1 reply, has 2 voices, and was last updated by  Site Admin 2 months, 1 week ago.

Viewing 2 posts - 1 through 2 (of 2 total)
  • Author
    Posts
  • #31934

    Devon Grosskopf
    Participant

    Hey all! I was diagnosed with AML with MDS in December 2016 after 6 weeks of different infections. I was in the hospital for 9 weeks. The 1st round of chemo 7+3 did not work, second round was just decitabine/dacogen for 5 days and BMB came back 2% blast. My BM Specialist now has me on it for 10 days and 3 weeks off. I have my 4th round of chemo 2nd round of the new plan. I have great support system but I want others to talk to about what I’m and your going through. I get the pity look at times, I’m asked how I am all day and told no no you shouldn’t be doing that because I have cancer.

    #31944

    Site Admin
    Moderator

    Hi Devon, Thank you for your post. I know this is a difficult situation for you. Are you going to an MDS Center of Excellence? Following is a link to our Centers of Excellence worldwide http://www.mds-foundation.org/mds-centeres-of-excellence/. I can definitely connect you with other AML patients for support. If you would like to speak with another AML patient, please email me privately at patientliaison@mds-foundation.org with your contact information. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. It contains strategies and tips for patients living with MDS. In the meantime, you can also view this video http://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

Viewing 2 posts - 1 through 2 (of 2 total)

Register for an account, or login to post to our message boards. Click here.

You must be logged in to reply to this topic.

Review answers to commonly asked questions or get answers to your questions from an MDS expert