meds

[billyb]

Has any one been on Decitabine ( Dacogen) ....wondering how much success...and experience with side effects

[kgtuck]

Started on dacogen right after my diagnosis 3 1/2 years ago. After 3 months of counts jumping up and down and all around (and a few blood transfusions, added platelets), as a nurse put it "after enough of the drug built up in my body", I've been normal since. Side effects are my white count dropping a bit after treatments and then jump back up to "almost" normal during my time off the drug. Other side effects for me some constipation and a day or so after treatments I feel a little "washed out" and have to take a nap (not so bad). Other than that I feel 100%! Have had only 1 infection (diverticulitis) during this period!

Take care and the best to you!

[billyb]

kgtuck, Thanks for replying...have you ever heard of anybody taking it along with herception my wife also has stage 4 breast cancer...they say its therapy related aml but with her karyotype i guess there treating it like mds..we will keep you in our prayers also....cancers are a nasty disease

[kgtuck]

Billy, so sorry to hear that your wife is having to deal with the two diseases. Don't really know much about any of the other chemo drugs. I do know that Dacogen works a little different than the others, it's a hypomethylating drug which in layman's terms "kills off the mutations to allow the bone marrow to make normal cells."

Also, the type of treatment chosen MDS depends on the subtype which takes into consideration any chromosome abnormalities. My advice is to see an MDS specialist (for a second opinion) if you haven't already because this disease is so complicated in it's diagnosis and treatments. Others on this forum have more knowledge re: taking the two drugs! The more understanding you have, the better! Take care!