CancerCompass message board discussion started by hurley on 3/19/2008 http://www.cancercompass.com/message-board/message/all,22152,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Bad new yesterday, my CT Scan came back and my left kidney tumor reverse directions and went from 4.6 to 4.8.  Needles to say, I was depressed.  My Onc. wants to take me off Sutent immediately and put me on Torisel.  I've been on Sutent for a year with great success, but have been lowed in dosage from 50mg to 25mg for the last two treatments because of a slight stroke I had in December due to high blood pressure caused by the Sutent, as the Hospital and Onc. think.  I'm partial to Sutent having been through all the side effects.  Torisel will require injections or infusions done at the Hospital every week.I'm looking for any comments the board might have...thanks!Hurley hurley Wed, 19 Mar 2008 00:00:00 GMT  On 3/19/2008 hurley wrote:Bad new yesterday, my CT Scan came back and my left kidney tumor reverse directions and went from 4.6 to 4.8.  Needles to say, I was depressed.  My Onc. wants to take me off Sutent immediately and put me on Torisel.  I've been on Sutent for a year with great success, but have been lowed in dosage from 50mg to 25mg for the last two treatments because of a slight stroke I had in December due to high blood pressure caused by the Sutent, as the Hospital and Onc. think.  I'm partial to Sutent having been through all the side effects.  Torisel will require injections or infusions done at the Hospital every week.I'm looking for any comments the board might have...thanks!Hurley I have been on the Sutent and suffered terrible side effects. I have found that the chemo is actually easier to tolerate . I was afraid that getting injected therapy would make me very sick but I have had very few side effects. If the Sutent is causing you to suffer high blood pressure ,your Dr. may be right in trying the Torisel. Geri28 Wed, 19 Mar 2008 00:00:00 GMT hi my hubby has stage 4 rcc and has done 6 cycles of 50 or 37.5 and 25 of sutent it was working then weakened his heart and had to stop for 3 months cancer grew alot in lymph node behing good kidney and has quite a few lung mets he went on 25 after 4 mos cancer grw from 3.3 to 3.8 and activity in lungs so he ahs gone back to 37.5 for 2 months to give sutent another chance as you say the side effects we know about and can deal with  torisel is being used by many too  with good results but now ther e  is a new drug called everlimus just  out they even stopped the clinical trials it was in because it did so well with people who sutent and nexavar has quit working for--ask your onc about that ours has suggested we go to that one if sutent has quit working we are part of a rcc network  called sharing and caring newsletter put together by mary Trent a rcc survivor--everyone writes into her by email and she puts it all together and sends it out to everyone it is wonderful everyone is either on sutent ,Nexavar, torisel ,,interferon, some are even in remission can you beleive that there are abouit 60 people already if you wwant the email address you have to write me as a private reply and I can send it to you that way --it is  uplifting and positive and the more info you have the stronger you are to fight this beast there is hope Peace, sue harley boy Thu, 20 Mar 2008 00:00:00 GMT I've gone from Nexavar (4 months) to Sutent (16 months) to Chemo w/Avastin (8 months) and now I'm on Torisel. My Onc is very quick to change treatement as soon as there is evidence of progression of the disease.  If a treatement is not preventing progress, there is no point in continuing with it. Good luck !D. J. Fivewould Thu, 03 Apr 2008 00:00:00 GMT Hi: I am in need of anyone to let me know what the side effects they had with torisel. I have been on sutent now for over a year and now I am facing surgery. I have a golf ball sized tumor in lower right lobe. After the surgery my oncologist wants me on torisel. I know full well the side effects I had with the sutent. I know each person is different so I am just posing the question to those who have had the torisel. Also to everyone keep the faith and hope everyday is a gift and medicine has come a long way. Thanks, Claudia Cloudy5450 Thu, 17 Apr 2008 00:00:00 GMT So far, after 5 weeks of Torisel, I find the side effects to be similar (in feature and strength) to those I experienced with Sutent.  Primarily fatigue, diarrhea, some impact to taste.  All of these are at a tolerable level for me.  (I treat the diarrhea with acidophilus.)     D. J. Fivewould Sat, 19 Apr 2008 00:00:00 GMT  On 3/20/2008 harley boy wrote:hi my hubby has stage 4 rcc and has done 6 cycles of 50 or 37.5 and 25 of sutent it was working then weakened his heart and had to stop for 3 months cancer grew alot in lymph node behing good kidney and has quite a few lung mets he went on 25 after 4 mos cancer grw from 3.3 to 3.8 and activity in lungs so he ahs gone back to 37.5 for 2 months to give sutent another chance as you say the side effects we know about and can deal with  torisel is being used by many too  with good results but now ther e  is a new drug called everlimus just  out they even stopped the clinical trials it was in because it did so well with people who sutent and nexavar has quit working for--ask your onc about that ours has suggested we go to that one if sutent has quit working we are part of a rcc network  called sharing and caring newsletter put together by mary Trent a rcc survivor--everyone writes into her by email and she puts it all together and sends it out to everyone it is wonderful everyone is either on sutent ,Nexavar, torisel ,,interferon, some are even in remission can you beleive that there are abouit 60 people already if you wwant the email address you have to write me as a private reply and I can send it to you that way --it is  uplifting and positive and the more info you have the stronger you are to fight this beast there is hope Peace, sueHi, i found your posting interesting.  I just turned 50 and have stage 4 rcc with tumours to the lungs and liver.  I've done High Dose IL2, Nexavar (and that worked for a whiled) and now I'm on Sutent for 1 month with scans showing a veyr slow prorgression of a tumour in the lungs.  I was wondering if i could have mary trents email so I can get her bulletins.  That would be great if you could do that...thanks so much....  david in california. neoflash Wed, 04 Jun 2008 00:00:00 GMT hi  glad to hear from you---hope you are well and still fighting there is hope------mary trent's email  address is TrentRAC@aol.com- but you may not get a rewponse right away she is having some problems and has had a setback but she will get to you  if you don't hear from her please contact me again and i will try for you she is not getting as many out as she was as it takes time to put the newsletter together--we are better doing the 12 th cycle of sutent and it is once again reducing the lymph node and they think it looks necrotic which is great--and his lyung mets are stable and unchanged  the 37.5 mg is doing a good job he has some symptoms like neuropathy n legs and arms and hands--aching all over--can't sleep good. pains in left back and rib--retaining fluid more and weak and tired easily but he does function and just does it  a day at a time and trys to eat fruits and veg and protein and rests if tired he feels crappy but is hanging in there hope you are responding well to sutent don't let your dr give up on it too early we kept trying and 50 at first then down to 37.5 then had to go to 25 that  wasn't enough so back to 37.5 and it is working ya! so good luck peace, sue harley boy Thu, 05 Jun 2008 00:00:00 GMT  On 3/20/2008 harley boy wrote:hi my hubby has stage 4 rcc and has done 6 cycles of 50 or 37.5 and 25 of sutent it was working then weakened his heart and had to stop for 3 months cancer grew alot in lymph node behing good kidney and has quite a few lung mets he went on 25 after 4 mos cancer grw from 3.3 to 3.8 and activity in lungs so he ahs gone back to 37.5 for 2 months to give sutent another chance as you say the side effects we know about and can deal with  torisel is being used by many too  with good results but now ther e  is a new drug called everlimus just  out they even stopped the clinical trials it was in because it did so well with people who sutent and nexavar has quit working for--ask your onc about that ours has suggested we go to that one if sutent has quit working we are part of a rcc network  called sharing and caring newsletter put together by mary Trent a rcc survivor--everyone writes into her by email and she puts it all together and sends it out to everyone it is wonderful everyone is either on sutent ,Nexavar, torisel ,,interferon, some are even in remission can you beleive that there are abouit 60 people already if you wwant the email address you have to write me as a private reply and I can send it to you that way --it is  uplifting and positive and the more info you have the stronger you are to fight this beast there is hope Peace, sueHello Harley Boy, I am interested in having you send me the e-mail address. I am new to this website. I had a full nephrectomy in 2006 on my right kidney and on 5-1-08 found out that it had mets to my lung and brain. I already had the radiation for the brain and hope to start Sutent this coming week for the lung mets. Thanks for responding!DebinMichigan DebinMichigan Sun, 08 Jun 2008 00:00:00 GMT Hurley - how are you doing on the Torisel?  How does it compare w/ the Sutent.  My wife is now on Sutent but the dosage has been reduced b/c of its side effects. stgooch Thu, 26 Jun 2008 00:00:00 GMT