What do we do now???
 

After going to NIH and having the BMB and evaluation, we didn't make it into the NIH trial for Eltrombopag. Al's blast numbers are now back up to 10-15% and the criteria is for less than 5%. So we met with our local oncologist today and he gave us the bad news that the MDS has become "more aggressive." He gave us a few options but none of them sounded very hopeful. He is trying to get in touch with a colleague in Alabama to see about a trial there and we are to call the doctor tomorrow to see if we can get in that trial. It's Oxi4503 or something like that. I've got to look it up.
Al's platelets still hover at 16,000 (he has no active bleeding, thank goodness), and his red and white counts are down slightly.
We were looking at the Eltrombopag trial in Tampa where the criteria is for patients with higher blast numbers. But our doctor thinks that the platelets are not a major concern right now, the blast numbers increasing are.
When Al was on the Sapacitabine trial last year, the blasts went from 15% in August down to 5% in November. But they took him off the trial because his blood lines were not responding. I'm wondering if he could be put back on the Sapacitabine since it helps his blasts, I think (I don't know what else would have caused them to come down). Anyhow I've sent an email to the Sapacitabine trial doctor to see if it's possible. Seems like I read somewhere that once they took you off a trial, you could not get back on it.
I know I'm rambling, but I'm really am having trouble keeping it all together. Al of course is worried that he is going into AML but I'm trying to be the strong one, when really all I want to do is sit down and cry.
This rollercoaster ride is not fun!
If anyone has any suggestions, PLEASE let me hear them. Thanks,

New trial
 

Hi Linda,
Hope your doctor will find a trial for you! Some members of this forum has tried Rigosertib (Estybon/ON 01910.Na).

http://clinicaltrials.gov/ct2/show/N..._unk=Y&rank=72
Kind regards
Birgitta-A

Birgitta,

Thanks so much for reminding me of this trial. I think you had recommended it awhile back and I've already printed off the locations and talked with our local doctor about a referral. Everything is just kind of running all together right now and I'm having to regroup and try to pull ourselves together AGAIN! This rollercoaster ride just keeps on going, but it's better than the alternative. Thanks again,

OXi4503
 

Hi Linda,
I looked at clin trials gov for OXi4503. It is a drug that destroys cancer-associated blood vessels.
http://clinicaltrials.gov/ct2/show/N...503+mds&rank=1

You know I am taking Thalidomide since June 2010 with positive results and that drug has an anti-angiogenetic effect (prevents new blood vessels to the fast growing tumor cells) like OXi4503.
Kind regards
Birgitta-A