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Bob,

My father’s experience was similiar to Kirsten’s dad. He did very well until they started to stretch out the frequency of the treatments. It may have been coincidental but we’ll never know for certain. My father’s doctor never suggested stopping the treatments claiming that his experience had been that once stopped they were unable to get patients back to previous response levels. Your response sounds great and I hope it continues for a very long time.

Maureen

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My father also did well with Vidaza for about 10 months but he had MDS not AML at the time. Everyone responds differently to these drugs so it’s hard to tell which will be the right treatment.

Maureen

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Terri,

I am so sorry to hear of Bob’s passing. You are in my thoughts and prayers.

Maureen

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Hi Susan,

When my father was in the hospital they were transfusing him every couple of days. Platelets seem to be the real problem but my understanding is that platelets don’t last long.

Is your dad still in the hospital? Is it an infection?

Maureen

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Deb,

My father also tried decitabine after Vidaza stopped working. Decitabine will most likely make his counts fall initially so be vigilant about watching for infection (take temp a couple of times a day). I hope it works for your father as it has for so many others.

Maureen

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Allison,

My father’s wbc was very low so we were instructed to bring him into the hospital if his temp exceeded 100.5

I agree with Neil. Ask the doctor.

Maureen

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His counts starting coming up just as he was beginning the second round. His platelets dropped after two weeks (from the beginning of the first round)then started to rebound and were triple by the end of the fourth week.

His counts always fell a couple of weeks after he started each round but were still improving from the baseline.

I believe ara C is a much stronger chemo than Vidaza. My father tolerated Vidaza very well but as we all know from reading posts on this forum everyone is so different. Take care.

Maureen

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My father started showing signs of improvement shortly after two cycles and was in the normal range for all counts after three cycles. I know that for many it takes 3-4 cycles.

Maureen

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Sandi

I’m so sorry to hear that your father passed away. My thoughts and prayers are with you and your family.

Maureen

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Jack,

Apparently they base it on hct. I’m sure two bags would make him feel much better. What oral drugs are you referring to?

Maureen

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Jack,

My dad had 11% blasts when initially diagnosed and I believe around 19% at the last bmb in May. The doctor said he will perform another bmb after a few months of dacogen. He has been treated at Dana Farber since his diagnosis with the exception of a few months in Fla over the winter. Thank you for the well wishes.

Maureen

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Abe,

Best of luck with Vidaza. My father was transfusion free for nearly ten months on Vidaza and in general felt quite well. I hope you have a similar response.

Maureen

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Jack,

My father was to begin his second round of Dacogen at 4 weeks but the doctor deferred it two weeks. He started round 2 this past Wednesday. His counts were very low but they still proceeded. The doctor has said he would not use neupogen to help the wbc for the same reason. Has your wife begun her 4th round yet? I hope she is feeling better and being to see some improvements from Dacogen.
Maureen

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Joy,

My father has not experienced any of the pains that you refer to. Why is the doctor only recommending 2 rounds? My father’s doc has told us that dacogen can take 3 or 4 rounds before you see improvements. How are you husband’s counts? My father’s are terrible. Thank you for the thoughts and prayers and I will do the same.

Maureen

Maureen

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My father developed a fever and was admitted to the hospital last Friday (3 weeks after he began Dacogen). They are treating an infection and we hope he will be better soon.

Dad was on Vidaza for 10 months with a good response and we were hoping for a response from Dacogen. Dad went almost a year without a blood transfusion but shortly after he went from 4 week cycles to 5 weeks cycles, it stopped working. It may be coincidental but who knows.

The first month my father was on Vidaza he needed several transfusions and his counts went so low but within a month he was holding his counts close to the low end of normal.

I hope Vidaza helps your father.

Maureen

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