Need others

[Devon Grosskopf]

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.

[Anonymous]

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 https://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 https://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.

[Author]

Posts