To everybody out there, thank you, thank you, thank you.
You have become the calm in the storm.
We have spent many sleepless nights worrying about this wretched situation. We are running like headless chickens as if every hour counts.
I understand that trials are ongoing but where is the information on results of trials that are completed? What do the oncologists base their protocols on?
Danielle - where can I find the literature coming out of France? The centre that my husband had his surgery was Paoli Calmettes in Marseille....does anyone know about this hospital.
Because Bahrain (where we live now) couldn't give a diagnosis, we went to Paoli Calmettes on our GI's recommendation. We flew out within 3 days of being told that he needed an EUS to diagnose the problem as no-one can do this procedure here. We can not speak French which proved difficult for us both and stayed there for 2 months while my husband recovered after the Whipple. Everything happened so fast that we did not have a chance to do any research to determine where the best place might be.
After reading your posts I think we have to try to relax and go with the treatment suggested by our original doctor as it seems that there is no established "guaranteed" combination of chemo drugs. We were concerned about whether this combination is the latest recognised treatment.
When we asked our French doctor about Cisplatin and Gemzar he said that Cisplatin had very many complications.
My husband is in good health at the moment And I really want to keep him that way as he has to have a good quality of life at the same time as fighting this disease. Our eldest daughter is getting married on 1st September in Cyprus and I want him to dance at her wedding!!
I've prattled on long enough.
I'll be on this site daily to keep my spirits up with the knowledge that I/we are not alone.