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Fahmi

My father had great success with Vidaza but he did have a similiar reaction to Dacogen. When you refer to 6 cycle what period of time are you referring to?

My father received it monthly for 10 months until suddenly it stopped working. It’s important that he gets nutrients so try Ensure or some other high protein drink.

Maureen

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Rose,

I’m so sad to read of your father’s passing. I’ve followed your posts and was hoping that Dacogen would work for him. My thoughts and prayers are with you and your family.

Maureen

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Zeke,

I’m so sorry to hear of your loss. Thoughts and prayers are with you and your family.

Maureen

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Katie,

You are all in my thoughts and prayers. It is wonderful that you were able to bring your father home and be together.

Maureen

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Joy,

I am so sorry to hear that your husband is not doing well. If they think he has converted to leukemia then there are several new/different treatment options.
There are many on this site who have gone through induction chemo with flying colors so stay positive. Where is he being treated in Boston?

You are all in my prayers.
Maureen

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Ira,

That’s wonderful news. Let us know how you make out on the 19th.

All the best
Maureen

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Leonard,

My dad followed a one week on three weeks off protocol from June 2006 through January 2007. Beginning in February he went to 7 days on(not including weekends) and four weeks off. By April his counts were below normal and the Vidaza stopped working. As I said before it may have had nothing to do with the timing but if I had to do it over again I would have stayed with the original protocol. Another issue I have wondered about is the use of neupogen. Originally they gave my father neupogen but when his wbc fell this past spring they elected not to give him neupogen. His doctor felt that neupogen can increase both the good and bad cells. In retrospect, I think we would have been better off using it but it is something you may want to research.

Maureen

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Leonard,

As you state there are lots of differing opinions on the “next step”. My father did very well on Vidaza until we started to stretch out the treatments. It may have been a coincidence but prior to the change he was doing great. His doctor had recommended staying on treatment indefinitely but was open to stretching out the treatments. His experience had been that patients that stopped treatment eventually relapsed and were unable to regain the previous response levels.
It’s wonderful that you responded to the Dacogen and are feeling well.

Maureen

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Neil,

I’m glad to hear you are feeling better and at home with your family.

Best wishes
Maureen

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Donna,

My father did very well with Vidaza. After it stopped working they started him on decitabine. My father had very low wbc to begin with and the decitabine knocked it down further and he developed pneumonia. With your father’s high wbc I would imagine that is not a risk. It usually takes 3-4 cycles for decitabine to “kick in” but many on this forum have had success.

best wishes
Maureen

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Stacey,

I don’t think you should be too concerned about them reducing the dosage. My father was on Vidaza for close to a year and tolerated it very well. He did have an issue with mouth sores and they gave him some kind of mouth wash that he used several times a day. You may want to ask the doctor about that. Vidaza can take several months before it begins stimulating counts and the first couple of months can be difficult with tx etc. My father ended up in the hospital a couple of times during the first month for transfusions. Also ask the doctor about the results of the bone marrow biopsy specifically blast% and abnormal chromosomes.

Maureen

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Shari,

My father also responded well to Vidaza but it stopped working after 8 or 9 months. Dr Azra Raza told me that her research shows that over 50% of patients that respond well to Vidaza have a similiar response to Dacogen. I hope your Dad is one of those responding.

Maureen

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Pigduck,

I am so sorry for your loss. My condolences to you and your family.

Maureen

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Our thoughts and prayers are with you and your family.

Maureen

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Susan,

I am saddened to hear of your loss. Please know that I am here for you, as you were for me.

Maureen

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