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Dacogen

This topic has 4 replies, 1 voice, and was last updated 16 years, 9 months ago by annie-anne.

Viewing 5 posts - 1 through 5 (of 5 total)

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July 17, 2007 at 8:58 pm #18762

SusanJ
Member

Hello friends,

It has been a while since I have visited this site. Life has been like a whirlwind for the past 18 months since my dad’s diagnosis with MDS. His treatment with Vidaza last December was not successful and now the doctor is suggesting Dacogen. Daddy is having to have transfusions every 2 weeks now. Any information on Dacogen would be so helpful and very much appreciated. Thanks!

July 17, 2007 at 11:38 pm #18763

jaxem
Member

susan
there is a lot of info on the forum to search on dacogen. it was good for my wife but like everything else, works for some & not others. my wife is about your dad’s age w/ same type mds. started w/ 18% blasts & now down to 2%. having transf. every 2 weeks isn’t abnormal when on these 2 demeth. drugs. you’ll find platelets going down even faster. what are his blasts at? has he tried revlimid?

July 18, 2007 at 3:35 pm #18764

SusanJ
Member

Thanks for the reply, Jack. The last BMB his blasts were 6%, he is having another BMB next week. He is having a transfusion today. He isn’t on any drug now except Aranesp injections every 2 weeks. Last week his platelets were 29, RBC 3.25, WBC 3.6. I still get confused and don’t totally understand how the counts are supposed to go. The doctor doesn’t seem to think that Revlimid would be helpful since Vidaza wasn’t. He told us that daddy has already lived longer than he though he would when he was diagnosed.

July 19, 2007 at 12:05 am #18765

jaxem
Member

susan
revlimid is fairly specific for -5q patients & is supposed to be very optimistic for it. i don’t understand why he needs a tx as those #’s aren’t that bad. i don’t like the doc’s comment per your last sentence. any thoughts about seeing another doc?

July 19, 2007 at 2:37 am #18766

annie-anne
Member

Susan: Dx 5Q and 9.. Since Jan 07, I have had 7 Rx of Dacogen and seem to be doing pretty well,I am 73, Dx @age 67. I also had packed cells almost every three weeks for low Hbg, total 12 but have not needed any for past six weeks, Dac did cause my WBC to drop and I did have a bout with Neutropenia and was hosp on heavy duty antibiotics, You should ask what protocol your Dr. is using, and don’t be afraid to ask questions. I have rcd. Procrit as aranesp did not seem to work as well for me for lo HBG. Weekly blood counts are VIP, and should be explained to you thoroughly, with Rx of different kinds for different levels. This site
is helpful also, Good luck.
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