Beth,
NIH in Bethesda, MD has the Promacta trial also and everything is paid for there. You don't even give them an insurance card. The criteria for their trial is different from Moffitt's (lower blast numbers) so Al was not able to go there for treatment and ended up at Moffitt.
But I personally check clinicaltrials.gov on a regular basis to keep up with what is available. On more than one occasion I have handed a study to our local doctor and asked "What about this?" and it would be something he had not seen before and he would call the investigative doctor for the trial and discuss it.
I know you and Earl are exhausted and frustrated, Beth, but hang in there, we are all here for you. I am so hoping and praying that all of our miracles are just around the corner.

Vidaza took awhile for me
 

I'm sorry to hear about Earl. I was diagnosed with MDS 6 years ago. I received Vidaza treatments for 2.5 years before it stopped working. When I first started Vidaza, the results appeared negative for 5-6 months. My blood counts continued downward and I required hospitalization for an 8 day stint due to extremely low white counts. However, around 6 months after treatments started, it suddenly started to work. Improvements were slow, but steady and I actually nearly normalized my blood counts close to 2 years thereafter. I had a quality of life that I never expected to see again.

I understand each individual with have a different reaction, but I want to add that my Vidaza treatment took 6 months before we saw a positive reaction. I had researched Vidaza prior to starting treatments and found that 4, 5, or 6 months are not uncommon for a reaction.

Vidaza response time
 

Hi all,

I wanted to chime in and say that with my dad it took at least 8 or even 9 cycles of Vidaza treatment before his response began. He eeked it out with several transfusions per month, both RBC and Platelets, before it began improving his numbers. He bumped along from Sept 2011 to March 2012 with Hemoglobin in the 6 to 9 range (Hematocrit 19-25) and platelets often unreadable (clumping) to a range from 3,000 to 20,000. In March 2012 he went from 20,000 to 81,000 in one cycle, to 120,000 the next. That was his high point. He's been slipping a little each month ever since and is back to 43,000 right now. Still, the Vidaza did give him some great benefit. I'm hoping this dip is a temporary one. Even now, he's doing pretty well all things considered. He is fatigued, but has no other issues at all. His white count has been below 2.0 for over a year so he's on a neutropenic diet. He hadsn't had an infection yet so hasn't had any antibiotics.

I hope this gives you some hope that there are better days ahead. It can take a while for the Vidaza to do it's work.

I am keeping you in my thoughts!