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Old Tue Dec 23, 2014, 09:27 AM
Golf_Nut Golf_Nut is offline
Join Date: Dec 2014
Location: Princeton, NJ, USA
Posts: 3
Low Risk MDS - oral vidaza trial

My doctor identified me as a Low Risk MDS patient about a year ago. He has been 'keeping an eye on it' since that time.

In my last appointment about 4 days ago, he suggested that I consider a clinical trial using oral vidaza.

Does anyone know much about this trial from experience? I have read about it on Clinical Trials .gov

Are there side effects? If so, can you tell me which are first? or the worst?
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Old Tue Dec 23, 2014, 12:55 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Hello "Golf Nut", I like your handle. They have told me I can start swinging a club again in about three days. I just had my triple lumen Neostar removed yesterday.

Everyone seems to react a little differently to Vidaza. It didn't bother me at all and I was often golfing the same day as my injections. Some people struggle with Vidaza. I do not know if the oral product will have the same side effects. Thank you if you do the trial. Many have been waiting for the oral Vidaza.

Keep us posted. I am surprised that the trial is on "low risk" MDS patients.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Tue Dec 23, 2014, 01:14 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
I just started on a lower intensity Vidaza treatment (5 days instead of 7) for low risk MDS after my numbers started dropping and I was needing transfusions. The thought is that Vidaza can stop the disease process from progressing in low risk patients. We considered a trial comparing Vidaza with Docogen in low risk patients - but it wasn't happening and we wanted to start treatment. The only side effects I had was pain around the injection site - and I generally felt good after the first treatment. I asked my doctor about the oral Vidaza thinking it might be easier than getting an injection - and she said that the it sometimes had gastrointestinal side effects that could be problematic - so we went with the injection. I'm sure everyone's experience is a bit different - and certainly a safe and effective oral Vidaza would be a lot easier than a visit to he doctor for a shot. I also thank you if you do the trial - and good luck with whatever you choose.
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Tue Dec 23, 2014, 03:39 PM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Oral Vidaza

Hi Golf_Nut!
You know as bailie wrote most Vidaza studies contain high risk patients. Here are two abstracts - both on high risk patients - about oral Vidaza. The adverse effects are probably the same in high and low risk patients even if low risk patients can tolerate them better.



As you can see they write in the first abstract that a Phase III study of extended oral azacitidine dosing is ongoing in lower-risk MDS patients.
Kind regards
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Old Tue Dec 23, 2014, 04:00 PM
Golf_Nut Golf_Nut is offline
Join Date: Dec 2014
Location: Princeton, NJ, USA
Posts: 3
thank you

Very helpful. Really appreciate your insight.

The second link must be the clinical trial that my physician is recommending. I will review it closely.

Appreciate other additional thoughts. My best to all.
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Old Sun Dec 28, 2014, 03:04 PM
SkipM SkipM is offline
Join Date: Nov 2007
Location: Philadelphia, PA
Posts: 19
I also like your name

At my last appt I talked with my Doctor at Penn, she said the Oral Vidaza trial you receive either a placebo or the Vidaza. You will not know which one you are receiving. I will have to have the Dacogen or Vidaza so I can not chance getting the placebo.
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