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?

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.

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.

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.

http://www.bloodjournal.org/content/122/21/1554

https://ash.confex.com/ash/2014/webp...aper71118.html

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
Birgitta-A

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.

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.