CancerCompass message board discussion started by Cynthiac on 11/8/2006 http://www.cancercompass.com/message-board/message/all,7683,0.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/ Hi there, I'm looking for advice for my mom who's about to embark on another round of Sutent. She's on the lowest dose possible, but the side effects are moderate to severe, worse towards the end of the 30 days. She has mouth sores, diarrhea and some nausea. After several weeks, it's trying on her emotionally and she's so frustrated. We've tried the BMX mouthwash which burns dearly at first and then numbs her mouth for a little while, not really a relief. She relies on soft, bland foods and goes a little crazy after the 30 days. Any advice would be helpful... Thanks very much, C Cynthiac Wed, 08 Nov 2006 00:00:00 GMT Cynthia, Has your mother discussed these negative side effects with her doctor? My husband completed six cycles of the sutent-2 at 50 mg per dose and 4 at 37 1/2 mg per dose. While the side effects were less severe at the lower dosage, they were still there. During the first couple of cycles, we seemed to be calling our doctor's office for help routinely. They were able to prescribe medications for the diarrhea, nausea, acid stomach, etc. This helped a great deal in making the side effects more tolerable. If she has not already done so, I would recommend that your mother contact her doctor. There is no reason to suffer needlessly when there are so many alternatives out there to lessen the severity of the side effects. Bunker Mon, 13 Nov 2006 00:00:00 GMT Yep, unfortunately we've tried meds to control the side effects, but without much luck at all. Not to be graphic, but the diarrhea is unmanageable and dibiliating, as well as the mouth sores. I found a paper written and published in a medical journal by a nurse on how to deal with side effects, and she suggested taking Immodium an hour before eating, and getting the doc to prescribe Protonix a drug usually used for Acid reflux. We'll see if that helps at all. She's six days in and had less side effects this week, but today was sick moments after lunch. If she opts out of the drug cycles, the doc has offered that her options are "limited" since surgery isn't an option. Her doc is a "top three in the world" but not the most proactive, or compassionate. I know folks who can page, or call their docs round the clock. We feel like we're bothering her if we ask questions via email. She makes little comments as if she's annoyed. My mom's quiet by nature, and aggreable and not put off by strong personalities, so she is kind of determined to ride it out. I wish there was an easy answer. Cynthiac Sat, 18 Nov 2006 00:00:00 GMT Good morning Cynthia, it's nice to formally "meet" you. The last reply actually came from my wife---she's always using my name. I kid her all of the time but she's been with me along this entire journey and I could not have done it without her. She keeps me grounded and helps ask my doctor all of the important questions. A little more on the side effects. My doctor did prescribe something for the diarrhea. I have the bottle at home and will check tonight for the name if you are interested--just let me know. We also used Protonix and it worked very well for acid stomach. A couple of "tricks" we learned. It takes a few days for Protonix to build up so start it a few days before going on Sutent. The common suggestion for taking the daily dosage of Sutent is to take it right before bedtime. The theory is that the patient will sleep through any side effects. We did this at first. However, try taking Sutent earlier in the evening and especially with food. The food seemed to do the trick for me and I normally don't eat right before I go to bed so that's why I started taking it at meal time. My wife also mentioned the lower dosage earlier. While the side effects were still present they were much less severe. Not sure what level you mom is on but they normally start out at 50mg/day but 37.5 mg/day has also been effective (and was for me). I understand your feelings that your doctor is not real approachable---I hear that alot. Maybe we were just lucky with my doctor but let me share our perspective on this. I have a great deal of respect for doctors but your mother is the consumer (patient) and you are part of her support network. You both have a right to ask whatever questions you want as the consumer. I always recommend that the patient take charge of his/her medical decisions (I do not mean self doctor) and how can you do that without asking alot of informed questions? Your doctor is a source of that knowledge but they work for you---not the other way around. If she is annoyed so be it---the stakes are too high to let this get in the way of your mom's treatment. Please stay in touch and let us know if we can answer anymore questions. Both my wife and I are available. Bunker Tue, 21 Nov 2006 00:00:00 GMT