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.

Just found out!

This topic has 5 replies, 3 voices, and was last updated 7 years, 2 months ago by bobderek.

Viewing 6 posts - 1 through 6 (of 6 total)

Author

Posts
February 13, 2017 at 3:29 pm #31652

Hans Keller
Participant

I am a 68 year old male, in Toronto, Canada. I have just been diagnosed with MDS, have been given 3 options, on do nothing and maintain life through transfusions, two have treatment with the latest drugs available or attempt a bone marrow transplant with a compatible donor. Would like some input regarding these options.

February 13, 2017 at 6:00 pm #31654

Anonymous
Inactive

Dear Hans, 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. Some MDS patients even seek third and fourth opinions.

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.

February 14, 2017 at 8:45 am #31658

Hans Keller
Participant

Thanks for responding, I would like to add a few additional points. I am under the care of a well renowned hematologist at Sunnybrook Hospital they have been very caring and understanding. I dont know if a second opinion may be of any help, it could only delay needed treatment as my diagnosis is High Risk MDS. Thank you so much for responding.

February 14, 2017 at 10:34 am #31659

Anonymous
Inactive

Hi Hans, That is great to hear! Are you seeing Dr. Wells?

February 14, 2017 at 12:28 pm #31660

Hans Keller
Participant

Yes, I am. Thank You

February 14, 2017 at 10:40 pm #31662

bobderek
Blocked

I am so pleased that you have a good doctor. If you have not been there already, I recommend that you visit Marrow Forums at the link below. There are very active Boards, including a Board dedicated to transplants. You will likely find some who are willing to share their experiences.

http://forums.marrowforums.org/

Good luck!
Author

Posts