[JordanN]

Hi, Everyone!

I haven't posted in a long time, but I have been reading everyone's posts and wishing you all the best in your daily struggles and amazing achievements with these bone marrow failure diseases.

I have read so many threads here, but I have never seen anyone in quite the same situation my dad is in, and I wondered if anyone has had a similar experience or can at least offer some insights as to what might be going on with his MDS.

He was diagnosed with MDS RAEB 2 18 months ago and immediately started Vidaza. He has never had a positive response to the treatment (no improvement in blood values and no change in marrow blasts % (always at 18%) or cytogenics. He also had many toxicity problems with the Vidaza. So, he has been on 4 days only of Vidaza every 5 to 6 weeks for the last year since it was thought the Vidaza might just be keeping the MDS at bay.

Last month for the first time, my dad's Hgb and platelets actually rose slightly on their own without a transfusion, and he held the values for 3 weeks (very long for him). We were shocked but happily thought that, maybe, somehow, the Vidaza was finally working. Unfortunately, at the exact same time, his white count (which has never been above 1) starting rapidly rising as did his peripheral blood blast count. His WBC is now above the normal range and his blood blasts are around 40%. He also consistently has nucleated red blood cells in the peripheral blood at about 11%.

His hematologist believes that the Vidaza may be positively affecting the platelets and red cells but is having no effect on the white cells and that my dad has transformed to aml. Due to his age (81) and poor tolerance of chemo, he feels there are no options for him so he does not want to do another biopsy. He will just let the blood values dictate what we do.

So, are we getting a good response just as we are turning to aml? Or are there other explanations for the contradictory values? If anyone has any ideas or experience, I would love to hear about them. It helps to deal with the roller coaster of emotions! Thank you!