On 11/30/2007 Plate Spinner wrote:
My mother was diagnosed two years ago in September with what they said was Carcinoid. She just turned 53. We found out last year at MD Anderson that it was actually Islet Cell Tumor of the Pancreas. She has tried chemos, it still grew. She got into a trial with Dr. O"Dorisio in Iowa. She did the trial drug Rad. Her kidneys failed. They think it was a combination of Zometa and RAD. Many thought (except Dr. Otto. He said she would regain function in a couple of months.) this was a life sentence, but in June she regained function (she lost them in April, she got function back in June)! God is awesome! Right now she is only on sandostatin. Rad did destroy her largest tumors in her liver. BUT...the cancer is still everywhere. Dr. Otto did mention the trial in Switzerland but financially it was impossible. She goes back to see him in December and we are praying that the trial may be close to being here. He is such an uplifting doctor and gives her hope that there is still something on the horizon. Does anyone have anymore information? I printed off many inspiring messages to give to my mother, and I had to call her when I read the message from Marcie77 and her good news. Thanks so much!
I am currently age 55 and was first diagnosised with islet cell tumor of the pancrease in 1989 (age 36). I had surgery to remove a growth in the pancrease a bit larger than a golf ball, the gall bladder and spleen. In 2000, I had my second surgery to remove an islet cell tumor that had metasized from my pancrease to my liver. This growth was 10 cm and removed in full. In 2005 three islet cell tumors were discovered in the liver. One was surgerically removed and the other two, located in riskier areas of the liver were treated by RFA (radio frequency ablasion). I've not been treated with chemo or radiation and have CT scans frequently to look for additional growths. My quality of life is good and I've found the site at the University of California to have very good information about current treatment options.