MDS AT RAEB 1, IPF DISEASE

[Greg DeFilio]

Hi there, my name is Greg. Totally new here so bear with me.

I have been found to have MDS , RAEB 1, however other issues, ( P-53 mutations ) and pulmonary fibrosis seem to rule me out as a candidate for a SC transplant. ( two specialist at Dana Farber Boston have stated this in my report )

I have not begun any chemo, numbers don’t quite call for it yet. Hemo is 10.8, WBC in range, platelets are 90-110 range.

I’m interested to know of others with IPF, ( interstitial pulmonary fibrosis ) are out there, and what they may doing if they too cannot get a transplant.

anything offered is appreciated…….

[mdsfound]

Dear Greg, 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. I see you have been to Dana Farber but many patients seek third and even fourth opinions. Happy to arrange a preferential appointment should you wish to do this. Please email patientliaison@mds-foundation.org. 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/. I hope this information helps.

[Author]

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