so new so sacred

[papeno]

Hi…I am so new to all of this, I don’t even know the right questions to ask. My pap is 79 years old and has mds. It is getting to the the point that it is almost leukemia. He was getting a shot to help him with his blood count, that was working great, and then it quit. Now he is getting transfusions all the time, and our doctor said that one day he will just have to get blood each day. They were talking about another type of treatment but he would have to be in the hospital for 3 days as he’s getting it. can someone please help me. My pap was just in the woods hunting last month, and now it seems like the doctors are giving up. You all seem to know so much, i’ll take all ideas and thoughts. i’m open to anything, we are just so scard now…thanks

[Zoe]

Papeno,

Welcome to the group, though I am sorry you have to be here. First some questions, maybe they will help you know what to ask. Do you know what type of MDS your dad has? Since it is "almost leukemia," I am guessing he has excess blasts. Do you know his blast count. What type of shot was he getting? Was it to help his red blood count? If they are talking about more intensive treatment in the hospital, it doesn’t sound as if they are giving up on him. They are still thinking ahead, so don’t you give up! I know it is hard and scary though.

Zoe

[papeno]

they are talking about dacogen, but said he would have to be in the hospital for 3 days as he is getting it, and only a 15% chance of it working…does anyone know anything about this drug

[billboy]

Hi Papeno,

Those who respond positively to dacogen treatment do so in one of the following three categories:

* complete response
* partial response or
* hematologic improvement

It appears that those in the first two categories comprised 17%; those in the last category 13%. So it seems to me that your father has a much better chance of improvement (30%), than the figure you were given, namely 15%. See pages four and five of this link:

http://www.fda.gov/cder/foi/label/2006/021790lbl.pdf

I received four cycles of dacogen from 10/30/06 through 3/2/07. Though I remained transfusion dependent for another five & half months, the time came when my hemoglobin quit falling. I am in the hematologic improvement category and remain transfusion independent to this day (much longer than anyone in the above referenced trial. Each category has very specific limits as you’ll note in the referenced article.

So I hope you’ll be encouraged by my experience and perhaps your father will do even better achieving a complete or partial response.

May God bless you and your father.

[Author]

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