Decitibine

[debs]

Hi,

I am new to this forum. My dad starts his first cycle of Decitibine treatment this week. He handled Vidaza well but it stopped working. His CBC just kept going up with the Vidaza and am hoping for the same with the Decitibine. Does anyone have experience with Decitibine? His WBC is 1.4 so I am concerned about it dropping.

[Jackie Jr.]

Yes I have been on it for 1-1/2 years. It was not bad at all after the first month. My counts went to the basement and then came back up to numbers I havn’t seen in 4 years. Then after each treatment his counts will drop and then about the 3rd week they will come back up. Or that is what I did. Side effects for me were mild bone aches which darvon….It is a mild pain reliever but it will not mask a Fever…Which is very important. Watch out for sick people and kids….I have not been sick for a year and a half….

If you or he would like to talk to me I would not have a problem in a phone call…We all help each other….Doctors are PRACTICEING….I love them, but ask lots of questions and kept asking..

Good Luck…

Jack

[jaxem]

deb
at the top right of this page you’ll see a “Search” icon. click on it and insert “decitabine, dacogen” in the box. click on “match any item” and a listing will be provided for all the discussion on decitabine. dacogen is the manufacturer’s (Pharma) name for decitabine. my wife has just started her 5th round. 6 rounds are typical with at least 4 rounds required to be effective. each round lasts about 6 weeks. the added plus is that she gets it at home mixed by a pharmacist and administered by a home visiting nurse rather than the hospital. the protocol has been trial proven by md anderson to be the same as being tx’d at the hospital. her side effects are practically nil. the previous comment by Jack Jr. is about the same for my wife but no bone aches for her. it has lowered her blast count from 18% to 2%. like vidaza, it’s a de-methylating drug, much less toxic for older adults than standard chemo protocols. good luck to him in his treatment.

[maueenh]

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

[debs]

Thanks so much for the info and support. It’s good to know the treatment has helped. It’s helpful to hear from people who are going through similar experiences – not just reading clinical results. Will definately monitor temp.

Thank you all,

[Author]

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