Torisel

I see that Wyeth has just applied with the FDA for approval of Torisel. Has anyone seen anything comparing it with Sutent. My fiance had a kidney removed in July and 4 lymphs. It has moved to her lungs (2 spots on left lung and one on right.) They originally were going to do the IL-2 treatment but decided after the surgery the tumor on her right lung was growing to fast to wait so they put her on Sutent. Within about a week she could breath much better and now as she is finishing up her 2nd cycle of Sutent the breathing doesn't even seem to be an issue. She will have a scan Oct. 23rd and we see the doc on the 30th. I am always keeping my eyes open just in case the Sutent stops working. I also want to thank everyone that posts on here, this has been a great resource for me!!

Dean, thanks for sharing your fiance's wonderful progress with Sutent. I'm not fimilar with Torisel but I will ask my oncologist at my next visit. I wanted to give you some additonal words of encourgement regarding Sutent. You mentioned being prepared if Sutent should stop working---it's always good to stay informed. I went through 6 treatment cycles on Sutent and have had what my doctor called a "complete response". My mindset is that Sutent has done it's job, including chasing down any cancer cells in my body. Time will tell but I've been "tumor free" for approximately 9 months and off Sutent for 6 months. My next scan is in mid-Nov. No one really knew if a person could go off Sutent since it is so new but we are trying that approach. So far, so good. One other piece of good news is that all of my side effects are gone. You didn't mention if your fiance had the common ones but I did. Now to look at me I'm back to normal (even though my wife would say that "normal" for me is still relative). Good luck and please keep me updated on your fiances' progress. I use these success stories frequently as I talk to others with RCC.

Bunker, thank you for the words of encouragement. It is always nice to hear someone that has "been there, done that". She has had some side effects. The first cycle of Sutent she went through she did very well, most of the discomfort she was dealing with was because of the surgery. With the second round she has had more discomfort including the fatigue, which is becoming pretty bad, skin rash, and the sore mouth. Due to the sore mouth she has struggled to eat but has done so as best she can knowing her body needs the fuel to fight. She takes her last pill tonight at 6pm. She is definitely ready to be done with this cycle. She has also had a spike in her blood pressure. Last reading was 170/117. All in all, she has been a true inspiration to everyone around her. One strange side effect that she has had with both cycles which her doctor said he has never seen is a rash on her inner thighs. It is not like the other rash she has from the Sutent, this is more like a chemical burn. Her skin is very red and burns. The spots are about as big as a tennis ball on each thigh. The only thing that she has found to help it is putting an ice pack on it. Her doctor gave her all kinds of creams and powders and nothing helped other than the ice pack. The only other side effects that I can think of is the loss of color in her hair and some loss of hair. Thanks again for the kind words, hope your scan goes well.

Dean, we learned some "tricks" along the way while on Sutent. I'll share the ones that may apply to your wife's reactions. Fatigue is something that I experienced with all of my treatment cycles and is fairly common to those on Sutent. I continued to work during my treatments and found that creating some "quite time" during my work day helped the most. What I did was to find an empty conference room at work (or our bedroom at home) around mid-day and sat in the dark for 30 minutes to an hour. I did not go to sleep but rather just sat there in the noise free room. This really seemed to calm me down and relax me at the same time. I had skin rashes but mine were small and mostly itched like dry skin. I used Vaseline Intensive Care lotion just bought as over the counter. They still itched but not as bad. I had mouth sores but they occured toward the end of a treatment cycle and I could tolerate them. You mentioned high blood pressure. One thing I was told was that for some patients, Sutent did impact the efficiency of the heart. They monitored my heart very closely during the trial via a MUGA scan which measures the ability of the heart to pump blood. For some patients their measurement got worse (the measurement is expressed in %--the number they wanted was 55% or higher). My MUGA number actually got better as time went on so my doctor didn't talk much about it. You may want to ask your doctor about a MUGA scan. You also mentioned that you wife takes her last pill tonight---fantastic. I don't know if your doctor mentioned this or not but it might help with your wife's tolerance of her side effects---it seems that the side effects go away pretty quickly after you end the cycle. For me, about 5-7 days later and I was back to normal (even though my wife would say my "normal" isn't really normal). The good news is no long term side effects. Change of hair color and some loss of hair--I did not loose any hair (at least not that I noticed) but my hair turned very white (my normal hair color is brown). Even my eyebrows and the hair on my arms/hands turned white. I referred to my eyebrows as "tiger stripes". My doctor laughed and said that he had seen this in multiple patients--mostly males. I asked him if my hair would ever turn back and he said he didn't know since the drug was so new. Well, here I am about 6 months off Sutent and my hair is very dark today---including my eyebrows. So there you go!! When does your wife have a scan to see how successful the Sutent treatment has been? Good luck and please keep me posted on her progress.

Bunker, I have found on this message board some information on a drug called BMX for the mouth pain. I will be asking the doc about that before the next treatment. She is having her next scan on the 23rd and we see the doc on the 30th of this month. Thank you for the tip on the MUGA, we will be asking about that. One thing of concern for me is the fact that since all this started they have not done a bone scan. She has been complaining of pain in her rib cage and I just want to make sure this hasn't spread into her ribs. Just another thing I will be talking to the doc about! I tend to really try to analyze all of the things she tells me and the pain in the ribs has me confused. I am concerned but on the other hand I think that maybe the Sutent is doing its job and the pain is coming from the blood supply being choked off to the tumors and the tumors "dying" inside of her. Did you have any pain associated with this process? Thanks again for all the information you are willing to share, it is so helpful!

Dean, I'm glad you found the reference to BMX. I had read that also but looked for it yesterday before I replied---had no luck finding that posting. I'll be thinking about you and your wife for her upcoming doctor visit on the 30th. I'm thinking this will be a good treat for Halloween. I did have some pains and as I remember them, they were very sharp; short in duration and took my breath away almost as if someone had sucker punched me. I remember thinking at the time that Sutent must really be kicking some ___. Please keep me posted and I look forward to hearing about your wife's GREAT news on the 31st.