CancerCompass message board discussion started by Sharencec on 12/29/2007 http://www.cancercompass.com/message-board/message/all,19206,0.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 husband has been on sutent for 12 months and the main tumor has shrunk more than 50%. He also has small tumors in the liver  and vena cava that have been there since the cancer was discovered. There has been no further spread of the cancer  which we have been told is unusual. The oncologists recommend surgery before he develops resistance to sutent which should occur soon. We understand this is major surgery with lots of risks that only a few doctors in the country would attempt.  Our GP estimates my husband has another year to live (most of it pretty good) even if sutent  stops working soon. If surgery is successful there would be a 3 - 6 month recovery period with unknown survival period or quality of life. My husband is leaning against having surgery and enjoying what time he has left traveling and visitng loved ones. Questions - Has anyone had surgery to remove a kidney and parts of liver and vena cava after taking sutent?  Would you have the surgery again knowing what you know now? Has anyone been taking sutent for more than a year? Will his resistance to the drug be obvious to us when it occurs. His only side effect in recent months has been hand foot syndrome. Sharencec Sat, 29 Dec 2007 00:00:00 GMT CORRECTION - My husband is leaning against NOT having the surgery. Sharencec Sat, 29 Dec 2007 00:00:00 GMT I've had RCC Stg 3B since Nov. 2005. When I was initially diagnosed, I was told I had 8-10 months to live.  I had sugery immediately to remove a large tumor and my right kidney. The tumor had extended into the Vena Cava.  The surgery was complicated and lengthy (5 hours), but I recovered quickly. (I had great surgeons in St. Louis).  I returned to work including frequent travel, within 6 weeks of the surgery. After the surgery, I had no tumors in any vital organs, just on my adrenal glands and in several lymph nodes.  In March 2006 I started on Sutent after trying Nexavar to no avail. Sutent held the cancer in check for 15 months. In June 2007 I developed "Pleural Effusions" (fluid buildup in lining of my left lung).  Labs indicated there was no cancer in the lining or the fluid, luckily. My oncologist is certain it is an indication of RCC progression, so we have stopped the sutent. We started a Chemo protocol of Gemzar, Xeloda, and Avastin, which is similar to a clinical trial in place at the Univ. of Chicago.    So far this has effectively stopped the progression, and I am still hoping for positive results. I personally would go forward with the surgery and maintain the expectation for long term survival.  Hang in there ! D. J. Fivewould Sat, 29 Dec 2007 00:00:00 GMT I have not been on sutent but I had my right kidney removed 10/06 and had my inferior vena cava tied off.  The tumor had grown into the vena cava and blood clots formed below it and they would not dissolve so they tied off the vena cava.  I will always have blood clots but they can't go anywhere.  I have to slow down when I'm walking and I can't walk long distances.  My legs swell and I wear compression stockings but at least I can walk.  Recovering from the surgery took about 2 months but I'm glad I did it.Who would be doing the surgery?  Talk to the surgeons before you make any decisions.  They can tell you what to expect.Keep asking questions until you feel comfortable with the answers then make a decision.Good luck and God Bless. Shakinpat Sat, 29 Dec 2007 00:00:00 GMT Hello Sharencec.........perhaps your husband would be interested in the information regarding successful treatment on this website. There are several major cancer treatment centers in the USA that are offering this now.__________________________http://www.medpagetoday.com/HematologyOncology/OtherCancers/ On 12/29/2007 Sharencec wrote:My husband has been on sutent for 12 months and the main tumor has shrunk more than 50%. He also has small tumors in the liver  and vena cava that have been there since the cancer was discovered. There has been no further spread of the cancer  which we have been told is unusual. The oncologists recommend surgery before he develops resistance to sutent which should occur soon. We understand this is major surgery with lots of risks that only a few doctors in the country would attempt.  Our GP estimates my husband has another year to live (most of it pretty good) even if sutent  stops working soon. If surgery is successful there would be a 3 - 6 month recovery period with unknown survival period or quality of life. My husband is leaning against having surgery and enjoying what time he has left traveling and visitng loved ones. Questions - Has anyone had surgery to remove a kidney and parts of liver and vena cava after taking sutent?  Would you have the surgery again knowing what you know now? Has anyone been taking sutent for more than a year? Will his resistance to the drug be obvious to us when it occurs. His only side effect in recent months has been hand foot syndrome. Shemay Sat, 29 Dec 2007 00:00:00 GMT Hello Sharencec,  I just started my 11th cycle on Sutent on Friday. I was diagnosed with cancer in my left kidney/adrenal gland in May 2006. My left kidney/adrenal gland and small section of my colon removed in June 2006. Other complications occurred during my hospital stay and I stayed in the hospital for 2 1/2 months. I also had tumors in my right adrenal gland, lungs, and abdomen. The largest tumor has shrunk from about 6 cm down to about 2 cm or less. At this time, the tumors I have left have stabilized not shrinking or growing. The side effects I have encountered so far have been varied but nothing I havent been able to deal with. My oncologist told me as long as I can tolerate the side effects and the Sutent is not damaging my heart function (monitored using a MUGA Scan) he would keep me on it. I havent noticed anything negative having been on the treatment for a year now. The side effects I experience are different each cycle so it keeps us guessing. I have a colostomy bag still so the diareah is manageable. I have had problems with my feet being inflamed/painful so I cant put my shoes on. Luckily it has only occasionally lasted 2-3 days in which I could barely touch them to put on the UDDER SMOOTH (US). Recently, I started using MSM as recommended by my sister, who has been an Oncology RN for over 25 years. It seems to help with the pain my then the US did. The US did help with the dryness and peeling. I might suggest to you to seek a second opinion on the surgery before proceeding.   Terryjoe Sun, 30 Dec 2007 00:00:00 GMT