CancerCompass message board discussion started by Roseann L. on 7/22/2002 http://www.cancercompass.com/message-board/message/all,583,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My nephew's very best friend from childhood is almost 50. He felt a lump in his abdomen and after getting a CAT scan, found he had a tumor. They did surgery to find they were not able to do anything for him. They opened him up and closed him back up again. They said the cancer was carpeting his abdominal cavity...and there was aorta involvement. They also told him that if he lived a year he would be lucky. This man is the kindest most loving man who has a wife and two sons, ages 17 and 20. They are devastated to say the least. I'm just wondering if anyone has ever had success in treating this type of cancer after getting such a terrible prognosis???? Thanks for you reply.........time is running out. Roseann From California Roseann L. Mon, 22 Jul 2002 00:00:00 GMT Hello, I realize this is a year or so too late but I was hoping you had some more information about your son's friend. My mother has been diagnosed with GIST tumors also. We are just sitting still waiting for the day the Lord takes her home. The doctors are saying there is nothing but surgery for treatment of this type of cancer. Has your son's friend survived? I am sorry if this comes at a bad time. I am looking for any and all information I can find. Kathy C. Thu, 17 Jul 2003 00:00:00 GMT Hi,I am a 43 year old female,who was diagnoised with GIST on 6-25-03. I underwent surgery only to be told that the cancer also involved the aorta. I live in Cols.,OH and was sent to Cleveland ,Oh for further tests and treatments. I also have a esophageal leiomyoma. I feel like I am an alien when I talk to doctors. They say this is more comon on Males 50 and older. I also have a 20 yr.old and an 18 yr old. I am too young to give up, I'd appreciate any information you may have. I am going to the Cleveland Clinic the week of 10-13 thru 10-17., for final testing and surgery dats. If I am not satisfied with the findings then I am going to the Cancer treatment center of America. Have you consulted them regarding GIST? I'd love to hear from you! Cindi B. Cynthia B. Mon, 06 Oct 2003 00:00:00 GMT HI,I would like to know how your Mother is doing? Have they considered more surgery? What about Gleevec? Was that ever mentioned for treatment? I will keep her in my prayers! Cindi Cynthia B. Mon, 06 Oct 2003 00:00:00 GMT Hi Cindi, Thank you for your kind words. My Mother is doing remarkably well really. If you didnt know she had cancer you would not know anything was wrong with her. I am so sorry to hear of your diagnosis. My mother went back to the surgeon on the request of her oncologist to see if the tumors on her liver were able to be removed. He told her that they were too big and to take them out now would only "peck" at the cancer and not do any real good. He advised her to get a second opinion from a Dr. Lauar (I am not sure of the spelling) at I.U. hospital. He is the Dr. that started the study of Gleevec for GIST tumors. She did see him with the same results other than he did suggest that taking a higher dose of gleevec would be about the only hope she would have. It couldnt hurt. So she is now taking 600mg of Gleevec a day. She has found that taking it at night helps with the side effects of nausia, diarreha, headache, fatigue although it does not help with the hair loss.(minor) I will warn you though when you go to seek a second opinion you may step on the ego of your original oncologist. Hers called her in immediately and informed her that she wasted her time because he(Dr. Lauar)was not able to give her any more information than he had given her already. But I would still encourage you to seek a second and a third opinion untill you are satisfied that you are doing all that can be done. Please keep me informed of your condition. I will also keep you and your family in my prayers. Kathy Kathy C. Mon, 06 Oct 2003 00:00:00 GMT Cindi, I forgot to mention that my mother was on Gleevec about a year or so ago. They took her off of it when she had her last surgery June of 2002. All 18 of the tumors they removed had high doses of Gleevec in them. So they told us that the Gleevec was reaching the tumors but not shrinking them. So I would say it is safe to say the Gleevec did not work for her. At least not at the dose she was taking 400mg/day. Kathy Kathy C. Mon, 06 Oct 2003 00:00:00 GMT