Just Started Sutent

Hi I'm a 53 year old man diagnosed with renal cell carcinoma in April. The doctor gave me three to six months to live. I'm feeling fine but the doctor suggested that I try Sutent. I started Sutent 50mg Friday September 8, 2006. Tonight will be my fourth pill. So far side effects are minimal I've just had itchy hands, and shortness of breath. Anyone that has tried Sutent and would like to provide any information it would be appreciated. I'll keep posting as I continue with my treatment.

I took sutent for 12 days then had to go the the hospital. My skin turned yellow and my head was in pain. My advice to you if to keep your immune system up. Drink plenty of organic juices and veggies. Look up on the internet all the anti cancer fighting foods and herbs etc there is to take. I wish someone had told me about this when I was taking sutent. Good Luck.

I'm so happy that you did respond so quickly and hopefully we can keep in touch and compare notes about this drug. I have only taken it for four days now and my only symptom so far is itchy palms. How long have you been on this drug and have you had any tests done to evaluate how it is working for you? I'm from eastern Canada and if you'd like to share your location, it would be great. Hope to hear from you again soon.

Hi Willard My husband started Nexavar which is the sister drug to sutent. Nexavar was approved by Health Canada July 31st. The reason I am replying is that my husband is 59 and has had renal cell Mets for 4 years now. We are also on the east coast in New Brunswick. I hope the drug works well for you. My husband started Nexavar Sept 4th and is having some side effect problems but we are trying to work through them. My husband was suppose to go on the sutent trial in Halifax however when Nexavar was approved by Health Canada they closed the study so he missed it by 3 days. It is interesting to know someone else from here as there is not much of a support group for the patients. My husband does not know anyone who has RCC in our area. Good luck and hope to hear from you.

Hi Mazzy..thanks for your message. We just found out about this forum yesterday and I think it will be a great communication device. We live in Newfoundland, not too far away and my husband just started his Sutent meds last Friday. So far everything is going well and hopefully it will continue. He had his kidney removed five years ago with cancer and did not have any signs of it until this April. It's such a strange disease and is definitely so silent. My email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you would like to email me sometime as it will be good to have someone to "talk" with. In the meantime, my husband will also enjoy your sending any messages his way over this forum, as he is just beginning to use the internet forums for information. Thanks again and all our best to your husband. Dee

I took sutent for 12 days..then on the 12th day I thought I would die...but remember I was not eating properly. Hopefully It will work for you. Everyone is different with side effects. I,m currently working with lahey clinic to see if I can have surgery to remove my two remaining tumors. One in my chest and one on my pancreas. If not I will most likey try nexavar. Good Luck..

Hi Willard-nl. I particiapted in a Sutent trial for RCC starting back in August 2005. I'll describe my experiences more from a side effects standpoint since that appears to be your interest. I had a total of 6 treatment cycles (28 days on and 14 days off) with fantastic results. I'll try to keep this reply short so for more of my postings and specific history please go to the Message Board and look under Renal or Kidney--most are listed under something to do with Sutent. I started with the 50mg dosage as you have for the first 2 treatment cycles. I saw no side effects until day 7 and then I got very sick with flu like symtoms. I just stuck it out. Sometime during the first treatment cycle everything I ate tasted salty. I just told my self that I needed to eat and tried to stay away from foods already salted. Fatique set in about day 15 and continued for the treatment period. About 4 days after ending the first treatment I was back to "normal" with little fatigue and returned to my regular routine. During the second treatment period (also at 50mg) I experienced the same thing and it hit me again at day 7. This time I tried to be a little smarter and my doctor prescribed some medicine to deal with the flu like symtoms. Fatigue was still a tough one but I kind of learned to deal with it. For me, I would rest when needed but continued to work. Finding some quiet time by sitting in a dark room seemed to help. The end of the second treatment cycle repeated the first---about 4 or 5 days off and I was back to normal. The salty taste stuck around and I found that eating foods with extreme spices seemd to work best, like mexican or oriental. Treatments 3-6 were done at a reduced dosage (37.5 mg). I basically had the same side effects but less severe. My doctor continued to prescribe medications to help with these side effects and I got dehydrated once which was my fault because I was not drinking enough fluids. I had a little trouble with mouth sores and dry skin spots but not too bad. My hair did turn grey during my treatments and my doctor said he saw this event in other patients. From my perspective the side effects are well worth the results of Sutent. Today, I've been tumor free for 6 months and off Sutent for 4 months. I feel great with no long term side effects---in fact even my hair has turned back to its dark color. I have one other recommendation: rely on your family for support and humor can go a long ways to keep things in perspective. I have a great wife who was with me at every appointment and made sure that I took every pill (did she ever). This "therapy" helped a lot with the mental side of this illness. Good luck and please keep me posted on your success.

Thanks so much Bunker for your response about Sutent. It's great to have someone to compare notes with. Although every individual reacts differently to meds, at least this gives me some idea of what I might expect and how to deal with it. Tonight will be my 8th pill and I guess 7th day and so far, everything is the same as before. I am noticing though that a small growth behind my ear is starting to diminish...so that encourages me. Probably next week might bring some discomfort but hopefully it won't be too difficult. I will keep you posted and thanks for the information about eating properly, drinking lots of fluid and the salty taste that I may begin to experience. I live in Newfoundland, down east and would like to know of your location if you don't mind. Please keep in touch and look forward to hearing from you again.

Willard-nl, We live in Blaine, Minnesota---a northern suburb of Minneapolis. My clinical work is done at the University of Minnesota and my doctor is pretty sharp. He's been in the renal cell cancer area for 10+ years. U of M is a teaching school so he gets to participate in a lot of drug trials. It's funny that you should mention the external spot behind your ear. I also had one at the beginning of my treatments. My oncologist didn't really note it in the study and it really didn't bother me. Well, we have a friend who is a dermatologist and he noticed it at dinner the very same day I started on my first treatment cycle. He said he was fairly certain that it was a basal cell carcinoma and should be looked at further. I decided to wait and deal with the RCC first. The shape of this "growth" was pea shaped and about the same size. After about 10 days on Sutent I could feel that it was no longer round but rather rough in texture. By the end of the first treatment cycle it was completely gone. My head is exactly where your's is today. IF this basal cell cancer dried up and went away (which is exactly how Pfizer said Sutent worked) I had good thoughts about what was going on inside even though we had no real evidence. I referred to it as my "outside barometer". I was anxious to see my first CT/PET scan which did show a 34% reduction. WOW. Good luck and I look forward to hearing about your progress.

Hey Greg L. My husband was diagnosed with RCC on June 19th. Had surgery on July 12th to remove the 11cm mass and his right kidney and started Sutent(50mg) on September 7th. He felt pretty bad when he started taking it, then felt a little better now he feels bad again. He has a lot of nausea (which he is taking Phenegrin for) and he aches all over like he has the flu. What did your doctor prescibe for the flu like symptoms? Also where had your RCC spread when they put you on Sutent? My husband has mets in his lungs. Any help you can give would be greatly appreciated. Melissa C