dacogen with ?

[sdrake]

The Revlimid doesn’t seem to be doing the trick for Dad, so they are thinking of trying Dacogen. I know I have read that they are seeing good results with Dacogen when used with something else. I can’t find what that something else is right now. Please help.

Thanks, and my prayers are with you all.

Shari

[jaxem]

shari
dacogen by itself works great for my wife. some people have had a lot of success with HDAC inhibitors added in the dacogen round. do a google search for “ms-275, dacogen” for trial information. I understand that it is not a “trial” anymore and should be considered. you need at least 4 round minimum, 6 rounds typical for dacogen to be effective. my wife did her 1st round in the hospital & final 5 rounds at home. being at home rather than in hospital does wonders for a patient’s attitude in treating this disease. you need to convince the doc of this. if I can help, let me know. your dad is about the same age as my wife. good luck to him!!

[sdrake]

Jack,

Thanks so much for your reply. How did your wife do on Vidaza? It worked so well for Dad for over 2 years. It is our understanding that Dacogen is closely related to Vidaza. We wonder, since the Vidaza stopped working, will Dacogen work? I know there are no for sure answers – wouldn’t it be nice if there were? I’m just curious as to what your thoughts are about this. Best of luck to your wife as well.

Thanks,
Shari

[maueenh]

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

[sdrake]

Maureen,

Thanks, for sharing that bit of information. We can use all the encouragement we can get right now.

Shari

[jaxem]

shari
my wife had 2 rounds of vidaza but got an infection which held up the following rounds to was scheduled to take. she never had a bmb after vidaza & you need 6 rounds of it so I don’t know if it was doing any good. her hematologist wanted her to switch to dacogen after she got better and she just completed her 6th round. there have been no side effects from dacogen. best of all, she got rounds 2 through 6 at home. a bmb after the 3rd dacogen round showed a reduction in her blasts to 2%. vidaza & dacogen are both demethylating drugs.

thanks for asking about her. i appreciate that. good luck to your dad on the dacogen. make sure they give him at least 4 rounds, preferably 6 rounds. ask them about adding an HDAC inhibitor to the regimen.

[cherylm]

Hi All,

My dad got his bmb results yesterday..after 5 rounds of vidaza + ms-275 we got nowhere. Blasts have gone from 3% to 13%. His doctor, who I’m a bit miffed at, pretty much sent us packing ! She said they have no other treatment to offer and that we shoud look for a doctor in Philadelphia. Now, don’t get me wrong, my plan to was get to University of Penn if the treatment didn’t work out, but it ws her attitude that floored me. Anyone out there treated at U of P who can put me in contact?? Dad is now RAEB-2 and very down. Thanks, all. Cheryl

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