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Clinical Trials Considering or participating in research studies

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  #1  
Old Wed Feb 8, 2012, 01:21 PM
nurseAngie nurseAngie is offline
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Location: Shawnee, Kansas
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Participating In VIDAZA Oral Drug Clinical Trial

My mom is currently participating in a Vidaza clinical trial with an oral medication. I'm looking for others who may be in the same trial. She finished first cycle and her counts are the worst they've ever been. Wbc 0.6, hgb 7.3, platelets 9. She had to get another blood transfusion yesterday along with her first platelet transfusion. She has three weeks to get her wbcs up or shes out of the trial. She took neupogen inj for five days and her wbcs went down. I'm worried. Anyone else in the same boat?
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  #2  
Old Wed May 2, 2012, 05:46 PM
lfeinsmith lfeinsmith is offline
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keep me informed

Quote:
Originally Posted by nurseAngie View Post
My mom is currently participating in a Vidaza clinical trial with an oral medication. I'm looking for others who may be in the same trial. She finished first cycle and her counts are the worst they've ever been. Wbc 0.6, hgb 7.3, platelets 9. She had to get another blood transfusion yesterday along with her first platelet transfusion. She has three weeks to get her wbcs up or shes out of the trial. She took neupogen inj for five days and her wbcs went down. I'm worried. Anyone else in the same boat?
I'm considering going into phase II later this year

Let me know how it goes
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  #3  
Old Tue Dec 23, 2014, 10:24 AM
Golf_Nut Golf_Nut is offline
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Location: Princeton, NJ, USA
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oral vidaza

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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  #4  
Old Sun Dec 28, 2014, 04:31 PM
Hopeful Hopeful is offline
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Hi Golf Nut,

Typically low risk MDS is not treated with Vidaza. To my knowledge, Vidaza is not a permanent cure. So, it seems like you would not want to start using it until you really needed it! Also, all of these drugs have side effects.

What are your counts now? Are you still low risk? Are you transfusion independent? Have you had a recent BMB?
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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