Quote:
Originally Posted by cme01
Hi Kris, good news at last.
I have a question for you. I noticed in the signature that Ricki was found to have deletion13. Was this only found after the Vidaza treatment? Was it a partial deletion and was it p or q?
I'm only asking because I've just been found to have partial deletion 15q which wasn't there prior to Vidaza. My diagnosis has been changed from MDS to copper deficiency bone marrow failure so there is no disease process that could have caused this finding.
I'm not upset that I had Vidaza unnecessarily, Im just looking for answers.
Regards
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His deletion was a 13q and yes it was present before the Vidaza.
For the many who get told watch and wait. It is not bad to wait. There are only so many modalities available and if one is impatient and rushes to treatment after treatment then there is nothing left when the going gets really rough.
We were 6 years from diagnosis to transplant. Everyone needs to understand the difference between supportive care and active treatment .
my prayers to everyone who is experience this challenge. Thank you all for all your kind words and prayers.