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MDS Myelodysplastic syndromes

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Old Thu May 10, 2012, 06:40 PM
stayinghopeful stayinghopeful is offline
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Back again :(

Hi all, I'm back with the worst case scenario..
If anyone remembers my story, father was diagnosed with MDS september of last year and was treated with VIdaza ( 4 cycles). His BMB after the 4th cycle showed 0% blasts and so we processed to transplant. On Jan 2012, he revied a SCT from his sister, who was his 100% match. Now, only 90 days post transplant, he has relapsed with 19% blasts in bone marrow (the same exact % he started with!). Now, dr is giving us two options, continue with vidaza and then get an IUD OR enter a clinical trail with vidaza and revlimid, followed by an IUD.

We are stuck. His dr didnt point us in ANY direction. He just told us we need to pick one asap..
He explained to us that the clinical trail is a more intensive regiment, so GVHD will be the main concern. Also, it has never been tried on someone who has relapsed after a transplant.
Also, now that he has relapsed, the dr said he is unable to determine if the Vidaza actually "killed" the cancer cells or if it just "shrunk" the cancer cells to the point where they were undetectable.
So, if it only "shrunk" the cancer cells, how do we know that the vidaza wont do that again? But what if it really did kill them? Doctors sometimes are so useless and are only good at telling you that you have little time to live. I feel like they can do more for us than what they are doing and this hospital is supposed to be a "hospital of excellence" :/

Calling other hospital all day to get other opinions of maybe other clinical trail information.

Anyone here with any personal experience or information about relapse after transplant..maybe an MDS patient. Could REALLLLY use some advice/help.

thanks all
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Old Thu May 10, 2012, 06:41 PM
stayinghopeful stayinghopeful is offline
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Here is my original trend

http://forums.marrowforums.org/showthread.php?t=2358
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