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Legnth Of Sutent Use

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Subject: legnth of sutent use
Date: 04/01/2008

 I am wondering what is the longest time anyone has known sutent to be effective?  I am aware that sutent seems to stop working for all patients eventually, and am trying to prepare the family for having to look at alternative options.

My dad has rcc, had a radical nephrectomy in '02, at age 51, with success.  He seemed tumor-free until Nov/ Dec. 06, when a few rcc tumors were found in his lungs.  In Jan. 07 he started  the Sutent 50mg,  3wk on/1wk off regimen. His platelets bottomed out, so he was changed to the 37.5 mg, 3wk on/1wk off.                                                            In early summer  07, his MD changed him to a continuous course of sutent, 37.5mg every single day, which he is still on.                               He has had good response to the sutent, with shrinkage in all the tumors, and while some of the tumors have now stopped shrinking, the sutent seems to be preventing any growth. His side effects have been minimal, with some altered taste, occasional foot pain, and mild elevation in BP.  He feels fine and continues to work fulltime and lives life as usual. He has remained upbeat and positive during this whole experience.  

The suggestion of surgery to remove one of his lungs(that has a tumor at the main stem bronchus) while the tumor is small came up recently. After a tumor board discussed this, it was decided that he should wait on this option, since it would not remove all the tumors he has (since there are tumors in the other lung too) and since the tumors are currently controlled and causing him no problems with his breathing or daily functions.  We are hoping the sutent will continue to work for him for at least several more months to a year, and know some new options are coming out, but want to be prepared to have to make new treatment decisions.

Caregiver
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DaddysGirl5
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Subject: RE: legnth of sutent use
Date: 04/01/2008

Hi

A tumor board certainly knows more than I do, but did they discuss the cyber knife for that tumor?  My dad wasn't a candidate because he had about 20 nodules in his lungs, but maybe your dad would be?

Subject: RE: legnth of sutent use
Date: 04/01/2008

I recently asked about cyberknife, and am waiting to hear back, I know sometimes when there are multiple tumors they are reluctant to use cyberknife since it is more of a systemic problem, but I'm hoping it may be an option at least for the spot at his main bronchus, since that is a sensitive area to have a met in. 

Do you know of anyone who has had success in using cyberknife for met rcc?

Was sutent an option for your dad?

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DaddysGirl5
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Subject: RE: legnth of sutent use
Date: 04/01/2008

 

I don't know anyone who has had the Cyberknife procedure.  We just ran across it in our research and it sounded promising.  My dad did take Sutent 50mg, but only for part of a cycle before he was hospitalized.  He had a very aggressive form of RCC - sarcomatoid - and he passed away very quickly.

 

Subject: RE: legnth of sutent use
Date: 04/02/2008
Many peple are on Sutent for a number of years with stable results. My husband has been on it for more than a year and continues to live a good life with a few sides but no growth-and he has sarcomatoid features as well. Another message board to check is the acor.org one which has literally thousands of people on it regularly. 
Subject: RE: legnth of sutent use
Date: 04/02/2008
Thanks for the info, I'm hoping the sutent will work for my dad for a few more years as well, he became a bit disheartened at his last visit when a Md told him that it would probably stop working for him in the next year or so...
Subject: RE: legnth of sutent use
Date: 04/03/2008
I have no idea why a doctor would say such a thing to a patient but it would be my signal to tell the doctor good bye. we work with one of th eworld's leading kidney oncologists in Boston and he is clear that he and we are working so that my husband lives with cancer not dies from it.  Any other approach is defeatist and wrong and I would run to anohter doctor if it were me....LT
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