CancerCompass message board discussion started by Teacher1 on 7/7/2006 http://www.cancercompass.com/message-board/message/all,5936,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My mom is suffering from renal cell carcinoma and has recently been put on the new drug Sutent. She is weak and tired with no appetite and seems very down. Can anyone tell me anyhting about this drug? Does anyone know anyone else that is also taking this drug and the side effects they are experiencing? Any information would be a big help. Thanks, Liz C. Teacher1 Fri, 07 Jul 2006 00:00:00 GMT Thank you so much for the information and support. I will be sure to look into it. Warmly, Liz C. Teacher1 Tue, 11 Jul 2006 00:00:00 GMT How is your Mom doing? I also have Renal Cell Cancer. I have tumors in 3 places and will start Sutent in 3 days. Side effects are different in everyone from what I understand and read. Any advice you can give me would be appreciated. Hope things go well. Jim Jim Hoff Thu, 13 Jul 2006 00:00:00 GMT I haven't viewed this site for a little while but wanted to offer some words of encouragement. I have gone through 6 treatment cycles of Sutent (28 days on and 14 days off) most of which were under the trial program---before FDA approval. We really didn't know what to expect but we did see common side effects. My appetite never did suffer but I did experience a heavy salt taste for any type of food for the first couple of cycles. I just told myself that I needed to eat but food was not very appealing. I do have quite a sense of humor and tried to look on the bright side---the stuff they make you drink for your scans also tasted like salt which is better than the normal taste. Other common side effects were fatigue, upset stomach, skin rashes, vomiting, and sore joints. This sounds like a long list but the occurance for me was certainly acceptable given the results of the drug. Fatigue was the most re-occuring but after a treatment or two I got to where I handled that one ok. On the postive side: my first treatment resulted in a significant reduction in tumor size; the second resulted in no metabolic activity; and by the third-fourth the tumor was completely gone. I went through two more treatments just to be sure and my latest scan in June was still clear. Time will tell but the results make the effort (and side effects) well worth it. Good luck to your mom and tell her to keep her spirits up and a sense of humor. The humor part really kept things in perspective for me and my family. Serious stuff no doubt but it helped to divert our attention. Bunker Fri, 14 Jul 2006 00:00:00 GMT Dear Bunker, Thanks so much for the helpful information. You don't know how much hope it has given me. I will pass this information on to my mom and family. I will also tell her to keep laughing, I too believe that makes a big difference. I'm glad to hear that you're are doing well and I will keep you in my thoughts and prayers. Warmly, Liz C. Teacher1 Fri, 14 Jul 2006 00:00:00 GMT Dear Jim, My mom took Sutent for two weeks. She was on a low dosage and wasn't on the typical cycle that most peple are on when taking it. This is because she is very thin and small. She would not be able to handle a regular dose. However, she is experiencing side effects. Her most common side effect is extreme fatigue, loss of appetite and some joint pain. Right now she is not taking it but will go back on it shortly. I hope this helps. You will be in my thoughts and prayers. Warmly, Liz C. Teacher1 Fri, 14 Jul 2006 00:00:00 GMT I forget to mention a couple of things earlier. First on dosage: I was on the maximum dosage level (50mg) during the first 2-3 treatment cycles and then on a reduced dosage of 37.5mg. We still saw good results with the lower dosage and my side efforts were lessen. I believe the drug was approved for a minimum of 25mg. Your mother might be better able to handle a lower dosage and still get the desired results. The second thing I forgot to mention was that my doctor was able to give me a prescription for most of the side effects except for possibly the fatigue. I just learned to rest when needed. The prescription he gave me for upset stomach, gas or diarrhea was probably the most beneficial. My point is that your mother will have options with the side effects. Please let me know if I can help further. My wife and I have been fortunate and we see this as an opportunity to help others. Bunker Fri, 14 Jul 2006 00:00:00 GMT Thank you so much! I will be sure to pass on this information. You have been so helpful! Liz C. :) Teacher1 Fri, 14 Jul 2006 00:00:00 GMT Hi Greg L My husband has kidney cancer,was dx a year ago but refused any treatments as it has spread to other parts of body, although not showing up on any of the scans. Now after a year we heard about this new drug sutent so went back to our Dr.After having test again Cat scan and bone scan and still the cancer doesn't show up except for the mass in the kidney Which they say has not changed since last scan. So he will be starting the sutent soon, and the question I have to ask is how long does a person have to take this drug. Our Dr hasn't given us any details on that.I know my husband will taking the 50mg. Thank you for listening to me. Dorisa Mon, 07 Aug 2006 00:00:00 GMT Since the drug is so new I'm not sure that anyone really knows how long to stay on it but I'll share with you my experience. Like your husband, I started out my first experimental treatment cycle (28 days on/14 days off) with the maximum dosage--50mg/day. We had fantastic results just after the first treatment--a 34% reduction in tumor size. By the way, this tumor was on my liver but did originate in my left kidney which was removed as a first defense. The second treatment cycle was also at the high dosage and resulted in no metabolic activity (the tumor was "dead"). The remaining treatments (I had a total of six) were at a lower dosage (37.5 mg/day) and 3 weeks in between. The entire time I was on the experimental program as Sutent was not FDA approved until my last treatment cycle. I was my doctor's first full response patient. We (the doctor, me and my wife) made the decsion to go off the drug to see what would happen. My thinking was that the drug had done its job and the upside to the treatments no longer justified the side effects. It was worth the risk and we would all learn something. I had my first scan after being off the drug for 3 months and no signs of the cancer. I had my six month scan just yesterday and will meet with my doctor on Friday. I feel good and we are confident. Since this drug is so new I don't think we (including my doctor) knows what the future will bring but if I pass the six month test we will feel good since my cancer originally returned just 5 months after they removed my kidney. Regarding my response to the drug: I think what really helped me was that we caught the re-occurance on my liver when the tumor was small and this may have attributed to my quick response. However, my doctor reported to me that he had had similar responses to patients with larger tumors, just not the quick full response that I saw. Good luck to you and your husband and please don't hesitate to contact me if you have additional questions---I probably missed something. Bunker Tue, 08 Aug 2006 00:00:00 GMT Will be having my right kidney part removed on Seept 16th. Was wondering what the cost for sutent is? have insurance but not sure how much will be covered. thanks Skip Blantyre Wed, 23 Aug 2006 00:00:00 GMT I was on Sutent for 6 treatment cycles but all were done under Pfizer's trial program so our out-of-pocket cost was zero. Since going off Sutent (and the trial) 3 months ago we have not had to return to the drug. Based on conversations with my doctor---- I understand that the drug is costly and some insurance companies have covered anywhere from zero to 100%. It would be good to contact your insurance company direct and find out what they will cover. In addition, we understand that Pfizer also has a program to assist with Sutent's cost under certain conditions. Not sure what those conditions are but I would recommend you or your doctor contact them depending on what your insurance company says. Good luck and please keep me posted on your progress. I found the side effects of Sutent to be tolerable and my wife and I refer to it as the "WunderDrug" Bunker Wed, 23 Aug 2006 00:00:00 GMT Bunker- If you don't mind my asking, how large was the tumor that responded on your liver? I am currently on my third week (first cycle) of Sutent, and thus far the only annoying side effect has been a few canker sores in my mouth. Smitty2006 Thu, 24 Aug 2006 00:00:00 GMT The tumors (there were three) that re-appeared on my liver were small. They did re-occur just two months after a portion of my liver was removed which speaks to the agressiveness of RCC. Two were 2X2cm and one was 1X1cm. I also showed some activity in the kidney bed where my left kidney was removed during my 1st surgery. All are now gone. On your side effects---that is GREAT news. Our doctor told us that he saw differences with his patients but with some consistent side effects. Mouth sores was one but I didn't really have a problem with mouth sores. Hopefully you are the type of person that will have few side effects. Based on my experience most of my side effects could be treated/minimized with some other prescription such as anti-nausea medications. We learned this "trick" after a couple of treatments. Most importantly, please keep us posted on your results. We've tried to understand why we have been so lucky and have decided that our role is to help educate and encourage others. We would like to share your experiences. Good luck. Bunker Thu, 24 Aug 2006 00:00:00 GMT Smitty, I forgot to ask---what dosage level are you on? During my 6 treatment cycles I started out on 50 mg/day (maximum level at that time) and eventually went to 37.5 mg/day. I pretty much experienced the same side effects but they were less noticable at the lower dosage. Fyi, we continued to see a good response at the lower dosage. Bunker Thu, 24 Aug 2006 00:00:00 GMT Thanks for the additional info. It is very helpful to hear others' experineces via this discussion. I am currently on the 50mg dosage and on a Phase II trial for patinets with VHL (Von-Hippel Lindau). One of the manifestations of VHL is RCC, and I currently have a localized kidney tumor just under 2cm. Will keep you posted on my progress. As part of this trial, they do not scan until after two full cycles (3 months). Smitty2006 Thu, 24 Aug 2006 00:00:00 GMT