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Anyone having had Dacogen…….

This topic has 17 replies, 1 voice, and was last updated 15 years, 3 months ago by Mary4Mike.

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January 25, 2009 at 9:41 pm #21772

Mary4Mike
Participant

shellbivens,

I found the info on the clinical study very interesting. We will keep an eye on the fact that they are testing dacogen by injection (similar to Vidaza) to see if there are better response rates than IV. I noted that one of the criteria for the study is that you can not have had previous treatment with Dacogen or Vidaza. I am glad that they are trying everything possible with the drugs that are available today.

Thanks for the info and all the best to your dad and you.

Mary

January 26, 2009 at 3:24 pm #21773

shellbivens
Participant

Mary,

We are hopeful that this will help with the least amount of side effects. MD Anderson did a prior study using a larger dose and had some success. At the moment, daddy is considered Low Risk MDS, but he requires biweekly tx. Sometimes he doesn’t make it that long before he needs tx. He needs to get blood when he drops below 10.5 (per cardiologist). He tries to wait longer than that and just minimize his activities….he stays soooo tired. Take care all and know that everyone here is in our prayers! I am so grateful to have this community to reach out to for information. I have been away for awhile and just learned of Neil’s passing. We have lost such a wonderful person! I personally have received a lot of great info from Neil and he will be greatly missed. I didn’t mean to ramble on. Best of luck to all!

January 27, 2009 at 12:48 am #21775

Mary4Mike
Participant

Shellbivens,

Yes, Neil was a wealth of information for our forum. It was like having a physician on board. Another member that I miss every day is Russ P. We emailed each other several times a week to compare CBC’s, Dacogen dose and nadir experiences, etc. He passed in August. It is like we are one big family even though we have never met face to face.

Take care,
Mary
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