CancerCompass message board discussion started by christina18 on 4/9/2008 http://www.cancercompass.com/message-board/message/all,22875,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Is there anyone out there that has Stage 4 RCC with metastasis to the lungs that tried Sutent but didn't work , then went on Toresil with results? I'm desperate to hear a good story. Thanks for reading.. christina18 Wed, 09 Apr 2008 00:00:00 GMT Hi! I was on Nexavar, and changed to Torisel. The Torisel was working for me, but since I am diabetic my sugar levels got out of control and I had to switch to Sutent. Increased glucose levels are definitly a side effect of torisel, but I already had trouble with diabeties. It was shrinking my tumors, so it is a good drug and I wish you much luck! I don't have results for Sutent. I will in 5 or 6 weeks.Richard Richard2 Thu, 10 Apr 2008 00:00:00 GMT Thank you, Richard!My dad won't start the Torisel for 2 more weeks.  It's reassuring to hear that it was shrinking your tumors.  My dad is not diabetic so that should help.  I hope the Sutent works wonders for you! Take care, Tina   christina18 Thu, 10 Apr 2008 00:00:00 GMT My husband has stage 4 RCC diagnosed Sept 2004 and was recently on Toricel (has also been on Interleuken, Avastin and Nexavar previously).  His first scan showed slight tumor shrinkage and his second showed the tumors to be stable.  So it seems to have worked.  In January his onc decided to stop treatment for a while to see what happens.  He goes for a scan the end of April.  I wasn't sure about stopping the treatment but she wanted to try it.  The drug is so new that I don't think they really know how long or often to administer it either. chrislol Fri, 11 Apr 2008 00:00:00 GMT  On 4/9/2008 christina18 wrote:Is there anyone out there that has Stage 4 RCC with metastasis to the lungs that tried Sutent but didn't work , then went on Toresil with results? I'm desperate to hear a good story. Thanks for reading..Torisal....Sorry but not one here, but did do Torisal, didn't work, side effects to numerous and servere, all kinds...Stage 4    2.6 years, just had L4 vertabra removed, bad met wrecked it fast, but caught it in time before it collapesed, post 14 days rough but getting better now, out and about almost everyday, tones of iron back there is doing its job very well too..pain was servere for a week ,now livable with just the min oxiecotton...plan on fishing Alaska in 50 days from now, sure I will be able too,by then..Have never missed a year till last, boocoo chemo for 15 months, everything available for RCC I have taken, except IL2 mixed with avistine or ?, avistine was ok for me, able to tolerate very fast, don't know if it did me anygood with the tarceva too, so???   take care an go for it my friend...Mel aged 63 Mtaj57 Mon, 14 Apr 2008 00:00:00 GMT  On 4/9/2008 christina18 wrote:Is there anyone out there that has Stage 4 RCC with metastasis to the lungs that tried Sutent but didn't work , then went on Toresil with results? I'm desperate to hear a good story. Thanks for reading..My husband has stage 4 kidney cancer and his Dr. just put him on torisel, he said that was the best for him.  He was on it for 8 weeks and then had a ct scan, and the Dr. said that the tumor in his lung had shrunk, so he feels that it is working, somewhat, so now he is on another 12 weeks to see how this works.  He is diabetic, but his sugars are under control.  He does need blood transfusions like every 4 weeks.  His hemoglobin goes down with this treatment.  He has a horrible appitite, but we do the best we can.  He does have swelling in his legs and ankles, but is on fluid medication.  There isn't much out there on torisel.  His Dr. said he is going to a confrence in May and will give me any information on the drug.   Good luck on the drug and hopefully this one will work for you.       dolphiin34 Wed, 30 Apr 2008 00:00:00 GMT Thanks for your reply, I wish you luck and send my prayers that the Sutent works for you! christina18 Thu, 01 May 2008 00:00:00 GMT I also have Stage 4 RCC with metastasis to the lungs. I also tried Sutent and my Oncologist removed me from that drug as it was not working for me.This past Thursday, I just had my 5th Torisel treatment.Last time they had to stick me 4 times before they found a vein. So next Thursday the 15th. I am having a port put in and then I am going for my Chemo. treatment right after it is installed. All the side effects that I did have are gone. The blisters in the mouth, I used Colgates Orabase for Canker and mouth sores. (CVS) and Benadryl for the blisters and itching on my feet.  Another side effect that has turned up, I have not read about, but wonder if anyone else has experienced it. I have nodules turning up on my scalp.They feel like small bumps all over. Good thing I still have my hair, which covers the bumps. (I just hope they don't spread to my face, or I might end up on the Science Fiction  Channel as one of those bumpy face monsters.Has anyone had this side effect, or can it be something worse?I did have a C Scan taken this morning of my abdomen/ pelvis/ chest and head. But will not know the results for a few days yet.It is a Stage 4 Kidney Cancer that I have.  That's it for now, and I hope all you mothers out there have a wonderful Mother's  Day. And know that all that are connected to this Cancer Compass forum as a patient or care giver for a loved one with this insidious disease, you are all in my prayers. God Bless You.... oldmom Yeoldmom Sat, 10 May 2008 00:00:00 GMT