Thank you! I'm looking for patient communities. I'm encouraging them to follow the route of ePatient Dave -
-----------------------------
Dave’s Story -- from
http://epatientdave.com/about-dave/
“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.
He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.
--------------------------------------
from what he told Jim -------- When he first received his diagnosis/prognosis, he obtained digital copies of his medical records, and placed them online on a site like Google Docs. He then went to any online patient community related to kidney cancer. There he described his situation, posted a link to his records and asked for advice. Various doctors and patients took the time to review his info & responded to him. From that he found the experimental treatment that cleared his cancer.
http://en.wikipedia.org/wiki/Dave_deBronkart
This is quite a good patient focused web site around treatments in the UK
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiaacutemyeloid/AML.aspx
A friend had AML and the first course of chemo failed then they tried different chemo drugs and a drug called mylotarg which targets certain chromosones which matched ones on her leukaemia cells. That bit of the treatment worked well.
http://www.macmillan.org.uk/Canceri...herapies/Monoclonalantibodies/Gemtuzumab.aspx
