CancerCompass message board discussion started by laughable on 11/2/2007 http://www.cancercompass.com/message-board/message/all,17614,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with Renal cell carcenoma in June of 2007. My kidney and an orange sized tumor were removed. There were clear margins and no lymph node involvement. I am part of a clinical study offering Sutent for people that are not metastisized but suspect of cancer cells leaving the primary site. I have had a hard time with the medication and have yet to finish a full cycle. Is anyone doing the same thing? laughable Fri, 02 Nov 2007 00:00:00 GMT hello, i, was too have rcc and has full rt nyprectomy and partial left nyprectomy was removed mar 2007. There was no mets on other parts on my organ but my onco suggested an oral chemo ( sutent). first it was on 50for two cycles then was down for 37.7 for two session and presently taking 25 mg since my body cannot tolerate the dosage. On Dec i will have to have MRI/CT, if found nothing my onco would stop my medication and will have an mri every 6 months thereon. The chemo was just a precaution that if ever there are microscopic lumps it will be irradicated. ( i hope so). Julib Fri, 02 Nov 2007 00:00:00 GMT Hi Julib,I just received your message and it seems we are in exactly the same place.I rarely go on to the internet because it brings you into the reality of cancer and it seems to bring me down. It's nice to know that someone else is in the same place. We are extremely lucky to not have our cancer spread and I feel very good about this new drug that seems to be working well with rcc.I started my first cycle on Sept. 7th and was able to tolerate 50mg for 16 days and then my pancreas had a rise in lipase. I had severe gastritis and ended up in the hospital with severe chest pain. I have had to stay off of it for three weeks until my pancreas returned to normal. I went on 25mg for two weeks and yesterday I started 37.5mg. The side effects don't seem as severe this time. I notice it mostly in my mouth. You are lucky that you have been able to get as much sutent in your body. I was on the fence about doing it at all. I was given a packet to read and the side effects really scared me. Now I realize it's not as bad as I thought because I am closely monitored.I am treating at Dana Farber in Boston. I had my kidney removed at Mass General in Boston. Yhe surgeon was excellent. He referred me to an oncologist at Mass General who is a sutent guru.He painted a dismal picture and I got a second opinion at DF. I like my new oncologist and she was in agreement that the sutent regimen was absolutely the way to go. I too hope the drug works as they hope. I have gone on with my life but cancer thoughts jump into my mind frequently.I'm sure we'll both be fine we just have to keep positive thoughts in our head and enjoy our life!!! laughable Sun, 04 Nov 2007 00:00:00 GMT Hi. My daughter is 9 years old and was diagnosed with ocular (choroidal) melanoma last Nov. She had a very large tumor and her eye was removed. She is monosomy 3 positive and c-kit positive (20%). We live in Florida but we are working with oncologist, Takami Sato, MD, in Philadelphia. He specializes in metastatic events following choroidal melanoma. He feels her chance of mets (most likely liver) is near 75%. He has suggested Sutent as a propholactic measure. Right now, my daughter is perfectly healthy...but the chances of mets are extremely high. Advice? Opinions? Thoughts? I would greatly appreciate any input! We are scared to death. khick Tue, 13 Nov 2007 00:00:00 GMT Hi everyoneAlthough I've been on this site for 2 years, it has been under a very rare cancer called urachual adenocarcinoma (belly button cancer). My sister has tried various regimes for this currently incurable cancer she now has pelvic, lung and bone spread and the doctors are trying one last attempt using sutent. She doesn't want to much trauma as she heads toward the last few months of her life but her oncologist at Columbia Presbyterian said it was typically well tolerated and could be taken at home in pill form and monitored by a visiting nurse. Any thoughts on this....how sick did you feel from the drug vs. the cancer...anyone have push back or no additional growth to report??  Urachualknower Fri, 16 Nov 2007 00:00:00 GMT Hi Julib,I'm glad that you are doing fine. My dad had diagnosted RCC in 91. There were no methastasis or any limf nodes were taken.They preformed a full nefrectomy on his left kidney. The doctors said that after 6 years passed he will have the same chances of getting this cances as any other men and that he is fully recovered. Unfortunatly they were wrong. After  13 years the cancer has come back.My dad never smoked so we didn't take notice when he started to caugh. Just when he got metastase on his hand we started to suspect that something is wrong. He made every year check up for his kidneys and liver and blood test. No one ever told us that RCC when comes back it comes on lungs or brain. We could have stopped it on time if we have had this "small" information.I'm writting this letter to all of you who had a good results and non methastatic RCC so that you would know what to do later. I'm still fighting for my fathers life and I don't know even how to get medicine because I live in country that health ensurance doesn't pay for any of these expensive medicines. Kind regards, ana andjelija Mon, 26 Nov 2007 00:00:00 GMT