Newly diagnosed

[Mary Barto]

I was recently diagnosed with High risk MDS I’m suppose to start the chemo pill after 1st of the year and meet with Transplant team. I appreciate being included in the group as I have lots to learn I will be traveling to MD Anderson in Jan for a 2nd opinion. Do you find most of the beginning treatments to be similar. I’m 66 and am hoping to qualify for stem cell transplant.

[Michael]

Mary~

I was originally diagnosed in June 2016 at 64 yrs old. Initially was told intermediate risk with 6% blasts. Local hematologist insisted on starting treatment. I received a second opinion at a Center of Excellence and the result was 1% blasts and no need for treatment. I get an annual BMB at the center for excellence and disease has not progressed, still 1% blasts. I am still on watch and wait.

Best wishes.

[Mary Barto]

I have had 2 BMB already I have blasts as well and chromosome and a DNA mutation. I do feel positive that MD Anderson is a great place to be. Trying to stay positive that my outcome will have some promising results.
I’m very happy you’ve had such a good outcome.

[Joe Catalano]

Been on watching weight will be starting treatment with Darbapoetin. Hemoglobin dropped to 7.9 from 10.2 1 1/2 years ago. Everything has recommended exercise, but has not been prescribed as necessary. Do you know what your treatment is going to consist of? I’m just curious about that.
Thank you if you get back to me and good luck to you

[Mary Barto]

Hi Joe
My drs notes said his recommended treatment is decitabine + cedazuridine. I’m not familiar with this but am assuming it’s standard?

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