CancerCompass message board discussion started by Chevydude on 1/27/2008 http://www.cancercompass.com/message-board/message/all,20382,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Is there anyone that has been on the 50 dosage of sutent for more than 2 months?  If so what side effects have you had and for how long?Or if anyone has been on the 50 dosage and decided to go to the 37.5,  did the tumors remain contained and or continue to shrink?I am on the second go around of 28 days on 50 dosage of Sutent (with results of tumor containment/had my right kidney removed Dec/2006)and am experiencing sore mouth (unable to eat much except mashed potatoes, milkshakes and soft fruit), fatigue and sore joints.Any input would be much appreciated, thank you in advance!   Chevydude Sun, 27 Jan 2008 00:00:00 GMT I am on my sixth round of Sutent, finishing the 31st of Jan.  My first round was at 50mg and was very difficult with nausea, hand and foot syndrome, mouth sores, fatigue and edema.  I was taking radiation treatments at the same time.  My onc dropped me to 25mg for the second course and that was no problem; almost no side effects. I went to 37.5mg on the third and again I handled it well with minimal side effects.  My last three rounds have been at 50mg.  Nowhere near the side effects of round one, however the last week I feel a lot of fatigue and my taste buds go away.  My side effects last well into the second week of my time off and thus I only get a few days of "feeling good".  Luckily the first 10 days or so are pretty much side effect free.Richard Catlett Richard7 Mon, 28 Jan 2008 00:00:00 GMT Hey Chevydude,I will be starting my 12th cycle on Sutent 50 mg in two more weeks. The side effects I have seen have been somewhat unpredictable. I have  experienced different side effects  to varying degrees in each cycle. Naucea and general tiredness have been pretty common through most of them. I have had the foot and hand syndrom during some of the cycles some worse then others. I have found taking three 100 mg tablets of vitamin B-6 a day along with Udder Smooth or Udder Balm have really helped. I used the balm with my skin became raw (open sores). The longest time I experienced pain in my feet has been 3-4 days. I have had sore hands a number of times making it difficult to use my hands. On one occasion, my hands peeled with the skin on my fingers and palms coming off. I have had diareah during most of the cycles, however I have a colostomy bag so it was as painful as it could have been, just inconvenent. There were nose bleeds on occasion. I also had some severe back pain and difficulty breathing during another cycle. I havent experienced the sore mouth so far. My sister, who is an RN in the cancer field told me about the B-6. She also told me about a mixture we can use to ease the pain in your mouth. I can check my old postings to this board on how to make it if you are interested. She got this info from the Drs she works with who use it on their Sutent patients.  You might want to talk to your oncologist about getting a MUGA Scan to establish a baseline for your heart. Sutent has been known to cause problems with patient's heart It actually measures the effeciency of how your heart is functioning. Also check with you Dr about the vitamin B-6 just to make sure but it shouldnt be a problem. The largest tumor I have in my right adrenal gland has shrunk from 5 3/4 cm down to 1 1/2 cm. The others have pretty much disappeared. The shrinkage has stabilized now but the good news is that nothing is getting larger. Good luck!  Terryjoe Mon, 28 Jan 2008 00:00:00 GMT Here is the suggestion my sister gave for mouth sores caused by Sutent:Sores in the mouth1/2 teaspoon of baking soda and 1/2 teaspoon of salt in 8 oz of warm water rinsing your mouth 4-5 times a day.I havent had a need to use it but she said the doctors she works with prescribe it to Sutent patients where she works.Let me know if it works for you. I havent had a need to use it myself. Terryjoe Mon, 28 Jan 2008 00:00:00 GMT  On 1/28/2008 Terryjoe wrote:Here is the suggestion my sister gave for mouth sores caused by Sutent:Sores in the mouth1/2 teaspoon of baking soda and 1/2 teaspoon of salt in 8 oz of warm water rinsing your mouth 4-5 times a day.I havent had a need to use it but she said the doctors she works with prescribe it to Sutent patients where she works.Let me know if it works for you. I havent had a need to use it myself. Thanks...will give it a try. Richard L. Mon, 28 Jan 2008 00:00:00 GMT