Diane,
Make sure that your physician knows that you are interested in clinical trials. Think about whether you?d consider only trials in Toronto or if you would be willing to travel if you?re eligible for a trial elsewhere.
You can search for open MDS trials at
clinicaltrials.gov. For each trial they show inclusion and exclusion criteria and contact information.
The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) has identified
Antidote as a useful source of information about clinical trials. If you fill out basic information about yourself, they will show you trials for which you might qualify or notify you when they learn of one.
And you can contact AAMAC and the U.S. AAMDSIF organizations directly for advice.
Transfusions have minimal side effects compared with MDS drug treatments, so don?t rule out that treatment choice.
Even when you?ve received care at a center of excellence, it?s still reasonable to seek a second opinion elsewhere, especially if you have any doubts about your doctor?s advice, or if you want to confirm what you?ve been told.