Dacogen
 

Hi All,
Now they report that suppression of the bone marrow after Dacogen treatment and dose reductions or delays on treatment may not necessarily indicate lack of efficacy; conversely, they may indicate a response to treatment.
http://abstract.asco.org/AbstView_102_82885.html
Kind regards
Birgitta-A

Dacogen vs Vidaza
 

Any thoughts as to taking Dacogen if Vidaza isn't working, or are they so similar it would be useless?

I was not able to find the articles, but I know that I have read in a couple of different places that some people respond better to Vidaza than Dacogen, and others respond better to Dacogen than Vidaza. They are very similar, but there is enough difference to consider switching.

Results from studies continue to accumulate, sometimes across different patient populations. I spotted a study from 2009 that reported statistics favoring Vidaza over Dacogen. That was based on almost 1000 patients across four studies, but of course those studies were even older than this 2009 meta-analysis. Newer data may show other results, especially because treatment with these drugs has evolved (e.g, changes to dosing schedules). You also have to notice what they are measuring, e.g., response rates, relapse rates, or survival rates over a given length of time.

I suggest to patients that they ask their own doctors why they'd favor one or the other, and most importantly why.

Dacogen after Vidaza
 

Hi cheri,
As DanL wrote Dacogen (decitabine) and Vidaza (azacitidine) are different. Here is a small and rather old study that shows that it you always can try Dacogen if Vidaza stopped working or didn't work:
http://www.ncbi.nlm.nih.gov/pubmed?t...%20Ravandi%20F
Kind regards
Birgitta-A

Dacogen vs Vidaza
 

Thanks Birgitta~You are amazing! Honestly, I can't understand a lot of these complicated abstracts....but this was simple enough, hopefully not out of date, conclusion wise...

After 7 rounds of Vidaza, I am just wondering what the next step should be....
I figure I can hang in a few more months, feeling pretty good...but getting a bit nervous, I must say. I have had quite a few PRCB transfusions (around 30) and need to start to see some improvements!

Continued Vidaza therapy
 

Hi cheri,
You have probably read this before - you should continue Vidaza treatment as long as you are responding.
http://www.ncbi.nlm.nih.gov/pubmed/21225870
Kind regards
Birgitta-A

Long term Vidaza
 

Hi Birgitta
Not sure I ever saw that paper--thanks!
But I still get confused on what a "response" is....that paper refers to a "first response"...I am still transfusion dependent, but otherwise seem ok. Feel normal enough to live a regular, if tethered life....most people in and out of the medical field say they would never guess that I was sick by looking at me...
Just when my #'s start to rise, it's back to treatment...does the bone marrow get tired of trying to "bounce back" and decide to quit altogether?
When I took a break for February, I still needed platelet transfusions along the way...nothing seemed to have improved...
Curious to what you and others think....

By the way, do you ever sleep? :D

IWG criteria for response in MDS
 

Hi cheri,
You know the International Working Group criteria for response in MDS are quite difficult to obtain – most patients are satisfied if they only get better without fulfilling the criteria.

Here are the criteria for Hematologic Improvements
Red Blood Cells:
Major: Transfusion independence or >2 g/dL increase in hemoglobin
Minor: 50% decrease in transfusion requirements or 1–2 g/dL increase in hemoglobin

Platelets
Major: Platelet transfusion independence, or increase of 30,000/μL if less than 100,000/μL at baseline
Minor: 50% or more increase in platelet count (at least 10,000/μL) if less than 100,000/μL at baseline

Neutrophils
Major: If ANC <1,500/μL, increase of at least 100% or absolute increase of 500/μL, whichever is greater
Minor: If ANC <1,500/μL, increase of at least 100% but absolute increase of <500/μL

http://www.moffitt.org/ccjroot/v11s6/pdf/03.pdf
Kind regards
Birgitta-A

Going to NIH for Danazol protocol
 

Hi friends, I'm going to NIH Aug 9, 10th to see if I qualify for the Danazol protocol. Any advice? I go annually for my BMB and other testing there, wish the hotel, airfare, and food was paid for...whew, expensive trip!