CancerCompass message board discussion started by TanyaM on 1/15/2008 http://www.cancercompass.com/message-board/message/all,19746,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother was diagones with Renal Cell a year ago.  She has been getting great results with Sutent accpet for the sores on her feet she has had other issues.  She is becoming immune and the doctor wants to try Torisel.  I would appreciate feedback form anyone else that has done this.  Are the side effects worse or about the same?  It has been a long ten months but she doesn't want to give up. We don't want her to be sick all the time so we are wondering how bad it really is?  Thanks for your help.    TanyaM Tue, 15 Jan 2008 00:00:00 GMT  On 1/15/2008 TanyaM wrote:My mother was diagones with Renal Cell a year ago.  She has been getting great results with Sutent accpet for the sores on her feet she has had other issues.  She is becoming immune and the doctor wants to try Torisel.  I would appreciate feedback form anyone else that has done this.  Are the side effects worse or about the same?  It has been a long ten months but she doesn't want to give up. We don't want her to be sick all the time so we are wondering how bad it really is?  Thanks for your help.    hi  we are part of a group of rcc survivors and have people who are on sutent, nexavar, torisel and avastin if you would l ike the email address justemail me as I am not allowed to give it out unless in a private reply--best of luck peace, sue harley boy Sun, 20 Jan 2008 00:00:00 GMT  On 1/20/2008 harley boy wrote: On 1/15/2008 TanyaM wrote:My mother was diagones with Renal Cell a year ago.  She has been getting great results with Sutent accpet for the sores on her feet she has had other issues.  She is becoming immune and the doctor wants to try Torisel.  I would appreciate feedback form anyone else that has done this.  Are the side effects worse or about the same?  It has been a long ten months but she doesn't want to give up. We don't want her to be sick all the time so we are wondering how bad it really is?  Thanks for your help.    hi  we are part of a group of rcc survivors and have people who are on sutent, nexavar, torisel and avastin if you would l ike the email address justemail me as I am not allowed to give it out unless in a private reply--best of luck peace, sueHI sue,  I am a Renal Cell survivor too and woul like to know more about your group.   I just got the good news that my tumor ws gone after my lst PET/Ct scan, I did 6 weeks of Torisel and PET/CT scan, ten 6 more weeks of torisel, another PET/CY Scan and it was gone, I ma doing another 6 weeks of Torisel as insurance  a PET/CT Scan and follow up PET/CT scans after that  hope to her form you soon and I also hope every one who is on Torisel ahs the good luck I had, my tumor was founf by CT Scan in the very early stages, 1.5 cm. Diane Diane1234 Thu, 24 Jan 2008 00:00:00 GMT  On 1/15/2008 TanyaM wrote:My mother was diagones with Renal Cell a year ago.  She has been getting great results with Sutent accpet for the sores on her feet she has had other issues.  She is becoming immune and the doctor wants to try Torisel.  I would appreciate feedback form anyone else that has done this.  Are the side effects worse or about the same?  It has been a long ten months but she doesn't want to give up. We don't want her to be sick all the time so we are wondering how bad it really is?  Thanks for your help.     Hi, I'm on Torisel right now, The side effects of this particular chemo is not bad at all. I am a new mother of a 5 1/2 month old son. It took me 38 years to conceive and carry a child full term. I found out a month after the birth, that RCC had returned and matastasized to my liver. I had my left kidney and adrenal gland removed 11/05. (that was the MOST PAINFUL thing I've ever been thru in my life.) I've been on Torisel since the first of NOV. 2007. I had multiple tumors covering my liver the largest being 11 cm. My latest CT scan shows that the center of the cancer tissues is dead, and the tumors have begun to shrink. The largest now being 10.3 cm. I am going to do 5 more weeks of Torisel and then another scan.  The first 13 rounds of chemo, they gave me staroids, this gave me hot flashes and my face got real red, my new doctor says that was a mistake, they shouldn't have gave me that, and now i take benadryl, tylanol, and a pill for nausia before each treatment. The day of chemo, I sleep all day. My feet are dry and cracked. In the beginning of NOV, I had some mouth sores. But now there really isn't hardly any effects. I still have all my hair. Except for always being so tired, I can pretty much do anything I want. If you didn't know I had cancer, you couldn't tell it. Don't be afraid of this drug. I believe it's part of a miracle we've been praying for. Thank you God and the doctors who didn't give up on looking for better treatments for us. I'd love to hear how others are doing on this drug after 20 or so weeks. There is also another option, they talked about doing with me if I hadn't gotten the results I've gotten. Only special hospitals with trained staff can do it, but they put you in the hospital for a week, it's a highly toxic theropy, but it could work. I talked to a lady that had it done 15 years ago, she's 85 and going strong. Her RCC has never returned. Good luck to you and your mother. I wish you both the very best.   LisaRenee Sat, 23 Feb 2008 00:00:00 GMT I am sorry to hear that, my mother was also diagnosed a few years back but it has been so fierce this past year.  She is currently getting toricel once a week and actually likes going, she has never been sick from it one day.  Unfortunatley in her case it has been six months and I just found out it is not working for her and the doctor wants to take her off but that may not be the case for everyone so give it a try. runningragged Sun, 24 Feb 2008 00:00:00 GMT  On 1/15/2008 TanyaM wrote:My mother was diagones with Renal Cell a year ago.  She has been getting great results with Sutent accpet for the sores on her feet she has had other issues.  She is becoming immune and the doctor wants to try Torisel.  I would appreciate feedback form anyone else that has done this.  Are the side effects worse or about the same?  It has been a long ten months but she doesn't want to give up. We don't want her to be sick all the time so we are wondering how bad it really is?  Thanks for your help.     My father was recentlly diagnosed witht he same. They started him on the Toriel for the first few weeks he suffer very high blood pressures. It also left him very sleepy. His dr shortly took him off and he started the sutent. He has now finished his 2 or 3 cycle and is doing very well. My only fear it that he will soon do them and become resistant to the drug. Then what do we have left to try,,,I will keep you mother in my prayers and hope that her effects are all positive. Please keep up your strength as well. Sometimes we are that all that keeps them fighting. carolinedes Sun, 24 Feb 2008 00:00:00 GMT  On 2/24/2008 runningragged wrote:I am sorry to hear that, my mother was also diagnosed a few years back but it has been so fierce this past year.  She is currently getting toricel once a week and actually likes going, she has never been sick from it one day.  Unfortunatley in her case it has been six months and I just found out it is not working for her and the doctor wants to take her off but that may not be the case for everyone so give it a try. I'm sorry the Torisel hasn't worked for your mother, I've been lucky so far. If they do take her off the torisel, there is a phase II clinical trial getting ready to start for RCC patients I've been looking into, that you might want to check it. Look for AS1411 in the search. It had very positive effects for the patients in phase I. Is she taking 25mg, in one hour fusions, once a week? What drugs are they giving her before her treatments start? The first doc that put me on this was giving me the wrong stuff.Good luck to you and your family. Lisa LisaRenee Mon, 25 Feb 2008 00:00:00 GMT