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Rosie,
When my Linda was on her death bed and I felt abandoned and that all other options had been exhausted, I started calling the major U.S. treatment centres. Living in Canada I didn't expect miracles BUT, miracles happened and I had at least 5 or 6 major Cancer centres involved in recommending traetment options. The Mayo Clinic, Cancer centers of Am., U or Phily, Cleveland Clinic, ....I can't remember the rest.
Long story short, these wonderful people with their combined resources saved Linda's life, were able to provide the most up-to-date and current chemo recommendations and ultimately influenced the choices of our local people here. Kudo's to Dr. Kathy Miller at U. of Philidephia.
My thoughts are that the "treatment paralysis" you are experiencing is resulting from empowering a limited number of individuals or less, how ever good or bad their individual resources may be, with your mortal destiny. Suggestion: get 4 or 5 or 6 other (concurrent) opinions. Devote 5 - 6- 12 hours on the phone with their research consultants, nurses, assistants, suppliers, who ever you think will be useful or whoever will listen.
The biggest obstacle in this search is overcoming your own fears and feelings of medical impotence. Show them how passionate you are about living and they will respond with the same. The medical profession's greatest ally is the uninformed and complacent patient.
Logistics.....
Looking back.......I think I started with the Am. Cancer society, explained our position ( liver mets and only 2 weeks to live) and asked for a list of the 6 top oncs who might be willing to look at our circumstance. That was a Wednesday afternoon. By Thursday noon I had 5 phone calls from clinics or doctors in the U.S. with concrete recommendations, treatment options, offers to treat....you get the idea!
That was 18 months ago. Support from the ladies on this board (and men) were also connected with the positive outcome.
I hope I wasn't too long-winded but I am very passonate about taking charge of your medical destiny AND using ALL available resources to achieve tht end.
Good luck,
Al and Linda
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