Fellow Sutent Users

Hello, this is my first time to post.  I too am on Sutent as of the middle of Feb. this year.  I went through 2 rounds of IL-2 treatments in the hospital to find it was not successful.  My doctor felt that Sutent was the best drug to start with.  I am on my second month with that and not without difficult side effects.  My mouth, tongue and gums took a beating!  At the end of the first dose, I could not handle it any longer!  I went off it 2 days early and took 2 weeks off.  I am through the 14 day period now and am off it for a week.  The cancer had spread to my lungs and spine.  I am going in tomorrow for a CAT to see if the Sutent is working.  God, I hope so!!!!!!!!!!

Good luck with your Cat Scan. I am also on Sutent, 3rd cycle, and awaiting a Scan soon to see if it is working. It is a very anxious place to be. My side effects have been limited to sore feet and hands. I am taking 37.5 mg after 2 cycles of 25 mg. I don't know if I could handle 50 mg., which is the standard dose, and probably the most effective. If it is working for me, I may try to kick it up another notch. If it is not working for me, I may still try to kick it up a notch. My oncologist and I have not had a discussion about it not working. I have been on Nexavar and Torisel, with some success, but bad side effects.

Good luck with your Cat Scan. Let's hope for better treatments soon.

 Richard

 

On 4/24/2008 lessonekidney wrote:

Hello, this is my first time to post.  I too am on Sutent as of the middle of Feb. this year.  I went through 2 rounds of IL-2 treatments in the hospital to find it was not successful.  My doctor felt that Sutent was the best drug to start with.  I am on my second month with that and not without difficult side effects.  My mouth, tongue and gums took a beating!  At the end of the first dose, I could not handle it any longer!  I went off it 2 days early and took 2 weeks off.  I am through the 14 day period now and am off it for a week.  The cancer had spread to my lungs and spine.  I am going in tomorrow for a CAT to see if the Sutent is working.  God, I hope so!!!!!!!!!!

                  Hi,Sorry Sutent is giving you a rough time. I just started my 4th round today. It has kept my cancer stable so far. The only side effects are  fatigue, feet are sore and peeling during treatment. I know that when this drug starts to fail there's Torisel. This will be the next treatment to fight this beast.So don't despair my friend keep fighting one day at a time. Take Care and keep the faith.   John

 

Dear Lessonekidney,

Sorry to hear about your experiences on Sutent! I was able to take Sutent 50mg for 12 cycles (72 weeks). The worst side effects I had were the same as your's, the feet and hands. I was still able to work full time thankfully. 

I got the following suggestions to deal with the sore feet from my sister who has been an Oncology RN for over 30 years. It seemed to work for me as I only had a few days in which I could not get my shoes on cuz of the pain. I took 3 - 100 mg tablets of vitamin B-6 a day. I also used Udder Smooth for the dryness and Udder Balm for the sores. I have read on this site that some people have used ice packs when their feet became inflamed to help control the pain.

Sutent stopped working for me in February when I experienced some severe chest pains. After a CAT Scan we found out the tumors in left lung had doubled in size. I just received my 3rd dose of Avastin this week. I am feeling a lot better and will go in for the next CAT Scan after the 4th dose. No side effects from the Avastin and it is given by IV once every 3 weeks. Hopefully, Sutent will continue to work for you! Take care!

Terry  

Hang in there. My first cycle of Sutent was rough.  My tongue was so sore that I could not eat.  The second cycle the Dr. put me on Protonix 40mg and Zantac 150mg.  I have not had mouth sores after the first month.  I am not sure what dose you are on, but after 2.5 cycles of 50mg I was switched to 37.5.  Still hard but doable.  My Dr. has changed my dosing to two weeks on one week off, as the side effects are so strong after the second week.  This is the fist cycle at this protocol and I can't wait till day fourteen.  So talk to your oncologist and don't give up.  I have to add that I have a lot of prayer support. I don't think I could have gone through this with out it.  Blessings, Robbie