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kgtuck Tue Mar 7, 2017 03:07 PM

8 years of Dacogen treatments
Haven't been on this site for awhile but wanted to update my condition. Have continued Dacogen treatments for almost 8 years now! My diagnosis of MDS RAEB 2, 10% blasts; no chromosome abnormalities; very low counts across the board; started Dacogen 2009 immediately after diagnosis; continuous healthy counts for 8 years now (low neutrophils from time-to-time as expected) but other blood counts are normal. I feel good!!!!!! Thinking of you all on this forum and hoping that others just beginning treatments will have the success I've had!
Bless you!:)

bailie Tue Mar 7, 2017 05:22 PM

That is terrific! That is the longest that I have heard for being on Dacogen with RAEB II. Any side effects from the Dacogen?

kgtuck Tue Mar 7, 2017 06:19 PM

Side Effects - Dacogen
None, really, I feel fatigued/washed out a couple days during and a day or so after treatments, but can't complain! I did get a blood clot near my port a couple years ago, but working fine since then, and that wasn't caused by the drug. Did have 1 infection in the 8 years, diverticulitis. But, I guess, no one knows "long-term" effects ??? I believe when I first started treatments in 2009 the drug was only 2-3 years old so there's really no statistical info; I feel good about being a pioneer and maybe my success will be encouragement for others!

Sue&Dave Thu Mar 9, 2017 07:02 AM

That's amazing! Of course it's the type of results everyone hopes for, but few are blessed with. I wonder if it is because you have no genetic mutations? My husband's blasts were at 6% but his symptoms were so overwhelming he needed to start of Vidaza to provide some relief. He was offered a clinical trial of oral Dacogen, which he declined for a variety of reasons. But maybe sometime in the near future you can transition to an oral regime rather than the monthly visits for infusions. So glad to hear some positive news on treatment!

kgtuck Mon Mar 13, 2017 09:33 PM

Success with Dacogen
Thanx for your note! Possibly my success has been because of no genetic abnormalities and no other illnesses in my first 61 years of life, other than "seasonal allergies-hay fever). No family history (3 generations back) of any major illnesses. My mother is now 90 yrs and both grandmothers lived to be 95 and 97! Father and grandfathers 83+. I was exposed to water contamination while living on a military base as a child.

I believe that Vidaza and Dacogen are very similar drugs (methyltranferase inhibitors). But there needs to be more research regarding causes of MDS, genetics?, environmental? Some causes are known such as radiation and exposures to harmful chemicals.

I had heard of the possibility of injection therapy, but not in oral form. I'm going to investigate that clinical trial you mentioned.

I have met patients on Vidaza that have had very good success for many years. My regards to your husband that he will improve.

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