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Old Fri Oct 20, 2017, 12:40 AM
rich rich is offline
Join Date: Sep 2016
Posts: 11
Will Dacogen work longer than 2 years?

I was diagnosed with MDS with 11% blasts about 13 months ago.After being on Dacogen or Decitabine for about 6 months I had another BMB that showed 3% blasts.

The stem cell translpant Dr said that Dacogen will work for aprox 18 months and my chemo Dr said it should work for aprox 24 months.
I still have the option of stem cell transplant but with 45% survival rate I want to do this as a last resort.

Does anybody know how firm these predictions for how long Dacogen will work are. Will it work longer?

Does anybody here have experience with Dacogen working longer than 2 years?
Male 64 years old. Diagnosed MDS with 11% blasts in August 2016. Blood counts have normalized after 3 rounds of (Dacogen or Decitabine) Currently on Month 24 of Dacogen. Waiting for Decitabine to fail before doing SCT.
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Old Fri Oct 20, 2017, 06:05 PM
lynette lynette is offline
Join Date: Apr 2011
Location: dutchess county, new york
Posts: 1
Smile Dacogen

In August of 2008 I was diagnosed with MDS (11-14 blasts). After some needed transfusions, my hematologist put me on Dacogen to be administered five days every four weeks. By April counts were pretty normal except for whites which are usually a bit low.
In 2011, I saw a reference on this site about a study at MD Anderson saying that doses could be reduced somewhat without problems. Since that time, I have been going for treatment four days a week every six weeks. The reduction did not make any difference in blood counts. I had not been diagnosed with any chromosome damage.
I wish you the very best, Rich. Every one is different, but I am grateful for Dacogen.
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Old Sat Oct 21, 2017, 12:21 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 554

I think that this question unfortunately is answered with the "results may vary" by individual. I have seen some people on the forums who have been on either dacogen or vidaza for several years and others for only a few months. The fact that you are responding is usually a positive indication for longer term success, but the truth is that any number given by the doctor is an estimate based on their experience, research, and expectations based on your particular case.

As Lynette mentioned, there are times after the initial normal dose phase that a reduced frequency and dosing schedule has helped limit disease progression and improve quality of life.
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Wed Oct 25, 2017, 12:29 PM
kgtuck kgtuck is offline
Join Date: Mar 2011
Location: Sylva & recently Waynesville, North Carolina USA
Posts: 47

I've been taking Dacogen treatments about 8 1/2 years, since June '09. What I have seen in those years, there doesn't seem to be a prediction from one person to another who will respond and won't. The one thing that was in my favor was no other health problems at all!

But, now things are changing for me - My counts seem to be going down after treatments so my doctors are looking at toxicity from the Dacogen possible causing a low white count and counts are not jumping back up like they should. After waiting 6 weeks out and a 4 day rather than 5 schedule seems to be working! Am I getting too much Dacogen now. Can't seem to find any clinical trials or info on this at all.

I guess we are learning the "long term" effects of this drug, which no one seemed to know a few years back.

Has anyone experienced this after long use of Dacogen?

Thanks, Lynette, there does seem to be a lot of experimentation with dosage and schedule!
66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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Old Wed Oct 25, 2017, 02:31 PM
Sue&Dave Sue&Dave is offline
Join Date: Nov 2016
Location: New York
Posts: 49
Hi Rich - I agree with others - your mileage may vary. When my husband began responding to Vidaza (Dacogen's kissing cousin), the first question out of my mouth was "how long?" To which his doc did not have an answer. What she did tell us though, was she had patients that have been on it for 7 years. She also said that the 1-2 year standard answer was based on clinical trial data, and to the best of her knowledge no further studies have been published on the long-term effectiveness of these types of agents. She also pointed out that many people that participated in the clinical trials were very sick to begin with and/or had other comorbidities that contributed to relapse. In my husband's case his blasts never went above 6%, but his 3 counts were abysmal, he had intermittent fevers and significant fatigue. Without all of his symptoms he probably wouldn't have started on the Vidaza. But we are truly thankful to his response. As a matter of fact, the only med he is on right now is the Vidaza. He will be starting Round 11 next month. We have the option of going to transplant, and keep in touch with that practice, ready to pull the trigger when necessary, but for now - we are riding the Vidaza train. Choo choo!
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Old Sat Nov 4, 2017, 07:00 AM
rich rich is offline
Join Date: Sep 2016
Posts: 11
Thanks for all the reply's and sorry for the long delay in posting. Between treatments I like to ignore my health problems as I'm pretty healthy otherwise, although living with this uncertainty takes a toll on my mental health.

I'll have a talk with my chemo Dr. about extending time between treatments (currently 5 days treatment 3 weeks between) to minimize toxicity, on my next treatment appointment.

Male 64 years old. Diagnosed MDS with 11% blasts in August 2016. Blood counts have normalized after 3 rounds of (Dacogen or Decitabine) Currently on Month 24 of Dacogen. Waiting for Decitabine to fail before doing SCT.

Last edited by rich : Sat Nov 4, 2017 at 07:26 AM.
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