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74 year old with MDS

This topic has 3 replies, 4 voices, and was last updated 6 years, 7 months ago by BRIAN DOOLEY.

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September 8, 2017 at 1:12 pm #33753

Donald Bodda
Participant

I was diagnosed with acute MDS 2 week ago I came ill with MDS on July 17,2017 so far I’ve been having to take platates and blood about every 14-18 days, today I’m waiting for the drug Amacor to arrive so I can start it hopefully it will help.
Can anyone give me some good advice on the best MDS clinic for research and treatment??
I’m not giving up and i’M GOING TO FIGHT FOR AS LONG AS i CAN FOR MYSELF AND FAMILY.

September 10, 2017 at 12:41 am #33759

Mark Simpson
Participant

karmonas Cancer Institute. That is who I am using.

September 11, 2017 at 11:25 am #33767

mdsfound
Moderator

I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

September 13, 2017 at 9:04 pm #33785

BRIAN DOOLEY
Participant

I am not sure where you are located. In California, Dr. Harold P Koeffler at the Cedars-Sinai Medical Center is the best. He is also on the MDS Foundation list of MDS doctors.
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