CancerCompass message board discussion started by Mazzy on 9/23/2006 http://www.cancercompass.com/message-board/message/all,6988,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello Everyone I am writing this message not to discourage anyone but maybe to share our story so it can help someone else. I have written on the board before my husband started Nexavar. He started it on Sept 4th - 2 pills twice a day. The first week went well. On Sept 9 the side effects started kicking in. His blood pressure went through the roof however after a trip to the ER and then to the Oncologist the next day that got under control and reduced the Nexavar to 1 pill twice a day. Wednesday, Sept 13 the rash started fast and furious. On Friday, Sept 15 the rash covered his whole body and then started turning fire red. He had no fever and it didn't itch however the heat generating from it was unreal. He lost his appetite and went very weak fast. On Sunday, Sept 17 it became unbearable and he was very weak. He fell in the house and that forced us to the ER again. He was admitted to hosp and Nexavar was stopped. He remained in hosp for 6 days. Upon his release from hosp Sept 22 he spoke with the Oncologist who decided to stop the Nexavar until Oct 6 when she will see him then and they can decide what to do. His skin is now peeling just like your skin would peel as if you had a major sunburn. This has been a very scary week and now we are faced with the dilema of whether to go back on it or not. Many of the doctors had never seen a reaction like this. His Oncologist said that he had side effect then took a reaction to the med on top of that which intensified things. So now my husband is not sure what he wants to do. He is scared this may happen again. So if anyone out there has experienced anything like this we would love to know. He was prepared for the usual side effects but this went over the limit. At this point he feels he may not do it again. Two weeks on Nexavar wasn't long however what it took out of him physically and mentally scares him. He is doing well now and building back up. Please let us know if anyone may have experienced anything like this? Mazzy Mazzy Sat, 23 Sep 2006 00:00:00 GMT I experianced the basic same thing with nexavar. I stopped taking nexavar and started taking Sutent. I'm suprised that your oncologist has not told you about Sutent. Side affects are min. 28 days on and 14 off. It has been a piece of cake for me. Some side affects but nothing like you are talking about.This drug is for RCC. Feel free to E-Mail me --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you have any more questions. I am on my 3rd month and doing fine. Jim Jim Hoff Tue, 26 Sep 2006 00:00:00 GMT I appreciate you taking the time to reply. I would love for my husband to try Sutent however it is not Health approved in Canada yet. He was to go on a Sutent trial however when they approved Nexavar (the sister drug) in Canada the Sutent trial closed. I don't think he can get Sutent anywhere here now. Unfortunately we were about 1 week to late getting his name into the trial. When they approved Nexavar here that was the drug of choice. It is also for RCC. With the reaction he took I think Nexavar is out of the question now and he only option is to go back on Intron A. It does not have the positive results we are hearing of Sutent and Nexavar. We hope and pray that maybe Sutent will get approved in Canada but it could take a while yet. Good luck with Sutent and we wish you all the best and prayers. We have heard from another man whe is having the same positive experience on Sutent. Nexavar is a good drug but just not the one for my husband. Mazzy Mazzy Tue, 26 Sep 2006 00:00:00 GMT