Hello Jan,
I was sorry to read about your husband and his journey with RCC. I'm glad that my information was helpful and I will try to answer your questions. In addition, I'm going to attach my story to give your husband something to relate to and I hope it is helpful.
Sore mouth: I only had a minor level of this particular side effect but I have read about many others who have shared this one. Many mention a prescription for a product called Miracle Mouthwash and they get a prescription from their doctor. Available at a pharmacy.
Sutent Cycle: I was on Sutent via the trial phase (before FDA approval). The protocol then was 28 days on and 14 days off. I believe that this is still the recommendation. Taking Sutent without a break seems pretty tough but I also believe that a person should go with what is working and this sounds like it is working for your husband. I do know though that many folks certainly look forward to the 14 day break and for me it gave me a chance to recharge. You did not mention---what dosage level is your husband taking?
Side Effects in general: we learned what I call "tricks" along the way to help deal with the side effects. Just let me know which ones are a bother. You did mention diahrrea. Your doctor should be able to give your husband some medicine to help with this one. You should monitor this due to the chance of dehydration.
Hair color change: this seems to be a common side effect. In my case even my eye brows turned color. My sense of humor described them as "tiger stripes"---at least that seemed more masculine. After I stopped taking Sutent my hair color did return to it's original color---maybe even darker.
I think I caught all of your questions but please ask more if you would like. Also, here is Bunker's story:
I was first diagnosed with RCC on 12/6/04. I was 47 years old, had never smoked and in reasonably good shape. This surprise came totally by accident during a routine physical for life insurance. My urine test showed high levels of protein. Needless to say the insurance company turned me down and I was ticked but this was the luckiest day of my life. My wife and I have been lucky many times during this journey. The first plan of attack was to have my left kidney removed. Like many RCC patients, we were told that the tumor was totally encapsulated in the kidney and since I was diagnosed as Stage I RCC, no additional treatments were planned. I was to be scanned every 6 months. Five months later I was at a routine visit with my general doctor due to minor swelling in my ankles and she recommended another CT scan. Then came surprise #2---the RCC had metastasized to my liver. Once again we were lucky. More surgery on my liver and I was now considered Stage IV. Three months after liver surgery the tumors appeared once again in the surgical area of the liver. At this point it was time to look for another strategy. While surgery had been effective in removing the tumor it was defensive at best. I wanted something that would treat my whole body given my opinion that if blood flowed into a tumor to provide nourishment why that same flow of blood couldn’t carry the cancer cells elsewhere. I am not a doctor but this seemed logical to me and I wanted to be more pro-active in my treatment. Luck once again fell upon us by finding Dr. Dudek (RCC specialist) at the University of Minnesota and more importantly he had a trial going for a yet to be approved new drug called Sutent. We studied what we could find and asked a lot of questions before determining that this was just what we had been looking for---something that would treat the whole body. We first had to qualify for the trial in the eyes of Pfizer. We went on a campaign to prove our "worthiness" and used a series of uniquely designed T-shirts to make our case. It must have worked because we were allowed into the trial (again that luck thing) and started Sutent in late August 2005---at 50mg/day. Because of the trial requirements I was able to have a CT scan after each cycle because Pfizer wanted the feedback. My doctor felt strongly about using a PET scan instead and Pfizer approved a PET/CT combination (I'll return to the significance of a PET scan later). After my first cycle we saw a 34% reduction in tumor size---we were very excited. I enjoyed my first 14 days off but was very anxious to return to Sutent. After my second treatment cycle (at 50 mg/day) we saw another reduction in tumor size but more importantly there was no longer any metabolic activity in the tumors---meaning that they were dead. It was the PET scan that told my doctor that the tumors were dead even though the mass still showed in the CT scan. This is the significance of a PET scan. We continued to take Sutent via the Pfizer trial for 4 more cycles but at the reduced rate of 37.5 mg/day. Our strategy was to continue to take Sutent until it gained FDA approval because if I left the study my access to Sutent would be gone. Once FDA approved, we made the decision (along with my doctor) to stop taking Sutent. That was on 4/30/06 and I have not had any signs of tumors since Feb. of 2006. While on Sutent, I did have the common side effects: fatigue; nausea; diarrhea; dehydration; taste change; some mouth sores; and even a change in hair color. We learned some "tricks" along the way to deal with most of these side effects. Attitude and humor played an important role also. I've often referred to Sutent as the "wunderdrug" and some folks take exception to that classification. I'm not trying to offend anyone but given our experiences and the fact that just 3 years ago the treatment options for RCC were fairly limited, I consider all of these new cancer drugs (Nexavar; Sutent; Torisel) to be miracle drugs. They may not work for everyone and they may not completely wipe out RCC but even if they buy us some time, a true "cure" might come along. I like that mental approach. Today I am monitored every 3 months with a PET/CT scan and I feel great. My spouse of 27 years is unbelievable. Her support reminds me so much of the other caregivers that I read about on this site and others. We are not sure why we have been so lucky or blessed through our journey but we truly feel that our purpose is to help others. We share our story often and have encountered folks with esophageal; kidney and liver cancer. It seems like we all have an instant bond and we encourage them to ask us any and all questions. While we are not educated as doctors we have gotten quite an education :)
7/7/08 Update:
It has been about 29 months since any signs of cancer and 27 months since I last took Sutent. My doctor continues to monitor me every 6 months via a CT/PET scan. My wife and I continue to help educate others to cancer in general and Sutent specifically.
11/11/08 Update:
Nov. scan is clear, no signs of RCC. This translates into 33 months since any signs of cancer and 31 months since I last took Sutent.
Your Friend,
Bunker