CancerCompass message board discussion started by lilsislovesdad on 7/22/2008 http://www.cancercompass.com/message-board/message/all,26339,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Subject: Need some advice (sutent)Date: 07/22/2008Hi to all you Kidney Cancer warriors, I am curious to how long those of you that have taken sutent have been able to handle it. Heres my Dads story. He was diagnosed in 7/05 and then had his right kidney removed. In 7/06 he started sutent 50mg. He had some rectal bleeding (has a heart cont. also) on plavix and aspirin. Well was taken off those two meds and the bleeding was gone. He then traveled to FL from NY and had the hand/foot sides. So he then went off the sutent for a few months. He then had disease progression and went back on sutent at 25mg. First scan was ok. The next more disease progression. In his pelvis and femur bones on the right. He continues to have small mets in the lungs and only with some decrease of the larger ones. Well its been up and down. At first all was working real well. Also other sites of mets. Now it seems like things are starting to go down hill. He dreads the treatment each cycle. This last time, which hes at 37.5 since 10/07 he just doesnt feel well. He told me the other day he could barely get through the last one. He has never said this before. Other than he just dreads it each month. I know there are other forms of treatment. He is also border line diabetic. So I think the doc said he may not be able to take the torisel.(sp) Anyway I wonder what to say and what to suggest for him. He has otherwise been farely lucky with side effects and what not. No weight loss even when he has his times of no appetite and very loose stools. I do not want to go here however I think he has had his share and just can not do it anymore.Please help me help him. We go to the doctor on 8/4 and well should I bring this up to him in front of dad or what. Should I call them ahead of time and let them know so doc can talk with him alone. I really can not stand the fact I can not do anything other then be here for him. I wish I had a magic wand that I could wave for all !! Thank you all for your insight. My thoughts and prayers are there with each and every one of you. I might add I will be here for any that need my support. Til then.A Friend Wendy :) lilsislovesdad Tue, 22 Jul 2008 00:00:00 GMT Hi, i took sutent for 6 mos. then my onc changed me to nexavar, been on this just a couple of weeks, may want to ask your fathers onc about this drug. Hopes and prayers for your dad.  Lee Lee G. Wed, 23 Jul 2008 00:00:00 GMT   Good Afternoon Lee,   Thank you for responding. I know that there are other treatments now available for this. However I just think that Dad is feeling he has had enough. I am sure that there is a lot of warriors that get to this point,Anyway he has had alot of issues with his thyroid.When he has his blood work done his function continues to get worse. The doc ups the meds for that. Takes him a bit to feel better from that. He has had these thyroid issues because of the sutent. Never had it before the cancer.Thanks again for listening and as I said I will be here for others. Drop me a line.A Friend Wendy lilsislovesdad Wed, 23 Jul 2008 00:00:00 GMT Dear Wendy,I was on Sutent 50 mg for 12 cycles before it stopped working. Tried a number of remedies for the side effects. The foot and hand syndrom probably was the worst of all of them compared to a lot of others. To help deal with it I took 3 100 mg tablets of vitamin B-6 a day. I also used Udder Smooth for the dry skin and Udder Balm for any open sores I had. It worked for me as I was still able to work full time which included a lot of time on my feet. Of course, Sutent stopped working for me eventially.My onoclogist then put me on Avastin (once every 3 weeks) which was supposed to be the next medicine with the best results AND the least side effects. Sure enough, I had no side effects at all from the Avastin other then being more tired then normal. After 3 months we found out it didnt work for me. You might what to suggest to your dad's oncologist about starting him on the Avastin because of the minimum side effects and see how it works for him.I am currently taking (3 cyles now) of Torisel 15 mg. I had started out at 25 mg, however the sores in my mouth so bad I couldnt eat and ended up losing about 20 lbs. The dr took me off of the torisel after only 2 weeks to recover from the sores and gain back some weight. He then started me on the reduced dose. I religously use a quart of water, 2 tablespoons of salt, and 2 tablespoons of baking soda a day to keep the sores at bay. This was actually information I received from the treatment center. Good luck and hang in there!Terry Terryjoe Fri, 25 Jul 2008 00:00:00 GMT Wendy,My husband is 58 and has been on Sutent for about 9 cycles of 4 weeks on and 2 weeks off. Terrible hand/foot side effects too. Some cycles not so bad though. But, it is the horrible fatigue that is the worst for this drug. It is the main reason most change to a different drug. Dave was on 50 and now on 37.5 and no change in his fatigue. It is so disheartening but so far it has worked. But for your dad at his age, I can totally understand. Dave is the same way. Some days he could sleep all day if I did not disturb him.All of the things you mentioned are very common and your oncologist will not be surprised by mentioning these treatment dilemas to him. Several people switch to Nexavar or Torisel. A forthright discussion with the docs are in order on the 4th. Keep me posted. Joan JG4240 Wed, 30 Jul 2008 00:00:00 GMT