CancerCompass message board discussion started by Lifeisgood on 9/12/2007 http://www.cancercompass.com/message-board/message/all,16095,0.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:I just found this site and would like to ask all those on Sutent if they have had problems with their feet.  I have been on Sutent since March.  I started with 50 mg. lasted 18 days and my feet became blistered and I was unable to walk.  I then went to 37.5 and made it through the 1st 28 days (with bandages on both feet due to blisters).  On the second round I only made 11 days.  I am now off for 2 weeks but will go back on again at 25 mg.  On my last scans the Sutent is working and my tumors have shrunk.  Is there anyone out there who has experienced the same problem with their feet and if so, have you found anything that helps prevent blistering.Please let me know and I thank you.  Lifeisgood Lifeisgood Wed, 12 Sep 2007 00:00:00 GMT Hi, Well my brother started Sutent 50mg from Feb 07, his 1st cycle was not that bad but later he started having intense side effects like you mentioned on his feets and also on his fingers. The oncologist did not decrease the medicine and still whenever my brother starts the cycle he gets walking problem. It seems his feets are in the same condition as your but he walks....he uses soft cushioned slippers and one can see that he is in deep pain when he is walking. Its good that the CT shows that he has improved and the tumor has almost disappered. He will have CT and PET Scan next month. Can any one let me know if PET Scan helps? thanks Hakona_matata Fri, 14 Sep 2007 00:00:00 GMT Hello,I am sorry to hear that you too are having the foot syndrome.  I found this site in June shortly after we found out my husbands MRCC had returned.  This has been a blessing.  My husband was on 50mg of sutent beginning in June.  He did not have the foot & hand syndrome but ther are many people on this site that has it.  It seems they use "utter cream" to help keep the skin moist and lessons the peeling of the skin on feet and hands.  My husband is now starting his 4 cycle but the doctors had to lesson the dose to 37.5mg due to other severe side effects.  He has the mouth sores that prevents him from eating anything for about 2 weeks towards the end of the cycle (with exception of jello, ice cream and chicken noodle soup); also has extreme fatigue, difficulty swallowing, extreme chills and blistering of the skin in private other areas.  This site has help me understand what is going on and helps find solutions. I really wish you the best of luck and hope you have many "feel good" days ahead,Jeff's girl Jeff's girl Fri, 14 Sep 2007 00:00:00 GMT  On 9/12/2007 Lifeisgood wrote:Hello:I just found this site and would like to ask all those on Sutent if they have had problems with their feet.  I have been on Sutent since March.  I started with 50 mg. lasted 18 days and my feet became blistered and I was unable to walk.  I then went to 37.5 and made it through the 1st 28 days (with bandages on both feet due to blisters).  On the second round I only made 11 days.  I am now off for 2 weeks but will go back on again at 25 mg.  On my last scans the Sutent is working and my tumors have shrunk.  Is there anyone out there who has experienced the same problem with their feet and if so, have you found anything that helps prevent blistering.Please let me know and I thank you.  LifeisgoodMy brother had renal cancer level 4 and was given the drug sutent as a means of shrinking his tumors that were not removed from surgery. His side affects were toughening of his skin around the finger tips and feel. He had to measure his blood gases from his little finger.The sutent drug did cause his blood pressure to go off the chart, scarred his lungs.In fact, he couldnt complete a sentence without gasping for air. No the cancer did not spread to his lungs, but was cused by the side affect of the cancer drug sutent.The onocologist from the John wayne Cancer Institute listed the cause of his death related to the drug sutent that affected his lungs. the coroner has over ruled this from L.A.The family is still waiting on the death certificate. It has been over six months. Beware of the drug sutent. This drug will introduce other things to deal with and may not work for what it has been designed to do. My brother was on the drug for six months and he died. there have been other cases that this drug has had the same affects.Good luck!!!!Hello,  Spdieselman1 Fri, 14 Sep 2007 00:00:00 GMT I, on the other hand, have been on Sutent for more than a year. My tumors have remained stable with some dying. Since I take the medicine to keep my alive--and not necessarily feeling good all over--I can't complain. However, a few points: The se's are different warrior to warrior. For example, some never have the foot and mouth issues, but do find a dry mouth and lack of appetite that is just frightening. When I began on Sutent, I had bad foot and mouth, but after four or five treatments, that went away. It was not fun, but I could walk(unlike Nexavar, every similar to Sutent) that damn near crippled me. I do believe the se's from Sutent are also somewhat or every cumulative. Lack of energy, shortness of breath, extended high blood pressure that kind of thing. It is nice to get teh 14 day break (and normally the foot business stops quickly), but it is important that you work to keep your body as strong (exercise) as your illness will allow. There is no reason to "beware" Sutent. Without it and Nexavar and Torisel (not to mention to a lesser degree, high does HL-2) advanced RCC patients would have the chances of the old snowball in hell for a long life or any kind. We are very fortunate we have them. Beware, however, reading individual effects of Sutent on the web. A lady wrote on one site how her husband died just a month after beginning Sutent. Turns out there was much more to that story and Sutent had nothing to do with his death. Sutent does not kill; complications from RCC kills. Lots of people come to these sights to vent their spleen. And as a newbie, you might learn now to read between the lines. As for RCC ultimately killing us. As the technology stands today, those of us in Stage Four may, more than likely, die from it within 15 years of dx. However, if you go and look at the statistics, they will tell you most advanced RCC warriors (95%) have an expectance of five years. All those statistics are meaningless now and will be for the next four to five years as the effects of drugs like Sutent are added in. Also, keep in mind statistics don't take into mind a lot of things: age of warrior, general health; extent of the cancer (Stage Four, for example, can be 24 tumors from head to toe which was my case, or just one met to the lungs). Side effects are awful. Then there is the alternative. We are not children. This is a real war. Do the best you can with the se's, but thank the fates for Sutent. Ten years ago, we didn't have it. Not good. Not good a bit. You might want to see my blog on this at www.mpablog.typepad.com/david_foster. We have a good time, but we also deal with this horror in a realistic way. Dave Davidf Fri, 14 Sep 2007 00:00:00 GMT Hi,A PET SCAN, is a special type of scan that will show if the cancer has spread, it picks up only cancer cells.  When you look at the scan anything that is white is cancer.  It will also show if the cancer has shrunk or just remained stable in size.  Good Luck.  Faccia Bella Fri, 14 Sep 2007 00:00:00 GMT Ditto to everything Dave says! The only thing I might add is that I know folks with other cancers undergoing chemo and or radiation. From what I've seen ... Sutent allows for an overall better quality of life. Some people don't think I really have serious cancer when I tell them that I just take one pill per day.I thank God every day for Sutent. I hope to take it for many many years. If it stops working one day, at least we have other options now and more in the pipeline.Fellow Stage IV RCC Warrior.Shaun Recnac Fri, 14 Sep 2007 00:00:00 GMT I agree whole heartedly with your response regarding sutent side effects.My husband has been battling metastatic rcc or 16 years now . His reoccurrence began at age 30 with mets in both lungs, the liver and around the aorta and superior vena caver. If you think sutent is hard to handle, you should have been around as a lab rat for all the previous treatment that never shrunk any of his tumours.  Our oncologist is the greatest guy in the world and he says that the sutent interfers with the blood flow to the tumours and it is most affective if you can stay on it as much as possible. My husband is now doing 2 weeks on and 6 days off. He has been on sutent since Feb 5/07 and last thursdays ct scan results showed some shrinkage and the rest stable disease. Each round of treatment produces different side effects, but, the 14 day cycle has been tolerated the best for him Rhonda Rhonda c Sun, 16 Sep 2007 00:00:00 GMT That's very interesting with the time on and off. I am on the normal 50 mg, four weeks on, two weeks off. I think I will ask my onc about a different approach. I also know you can get Sutent in 25 mg and 12.5 mg (I think that is correct), which I understand many people can handle much better. But the point is, it is helping all of us stay alive longer and the side affects are just the price we pay (other than the money of course; my lord the money). Best to you and your family. Dave www.mpablog.typepad.com/david_foster Davidf Mon, 17 Sep 2007 00:00:00 GMT