Just hit stage 4 - Sutent?

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Just hit stage 4 - Sutent?

by Iowaguy on Sun Nov 08, 2009 03:48 AM

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I am 50 and was diagnosed five years ago with RCC in my left kidney. Surgery removed the kidney and I have been followed annually. This year we found metastisis to my lower lobe, left lung and removed a small tumor recently through a VATS procedure on 10/22/2009.

Now my PET and MRI are clear but my oncologist would like to use Sutent Prophylacticaly in case their are some microscopic particles that we can't see on the scans.

Anyone in a simliar situation? What can I expect with this drug?

RE: Just hit stage 4 - Sutent?

by howell58 on Sun Nov 08, 2009 07:15 PM

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Hello.  My husband was initially diagnosed with renal cell cancer and had his kidney removed as well.  Biopsy was baffled and determined it to be something else, retroperitoneal liposarcoma.  Was referred to Sloan Kettering in NY because of the rarity of it and difficulty treating it.  Surgery (complete resection) is only possible hope.  He is coming up on his 3rd surgery on the 16th of this month.

As far as the drug, for me it would depend on how comfortable you are with your treating physician.  I know it is difficult to trust them at times, but with this god awful disease I think I would try anything.

God Bless

Sue

 

RE: Just hit stage 4 - Sutent?

by RandyC on Sun Nov 08, 2009 10:15 PM

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My mother is in a similar situation.  She had her right kidney removed in 1992 with no further issues with cancer until this past spring when it was discovered she had a tumor on the lower lobe of her right lung and a nodule on her right lung both were removed and both were renal cell.  As far as doctors can tell now she is cancer free, but her oncologist also started her on Sutent.  He started on 25, but she had some difficulties so that last two rounds she has benn on 12.5 with plans to go back to 25 after the holidays.  Good luck with everything.

RE: Just hit stage 4 - Sutent?

by Iowaguy on Mon Nov 09, 2009 10:47 PM

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Thanks for the reply, hopefully we will have a good outcome.

RE: Just hit stage 4 - Sutent?

by francesgay on Sat Nov 14, 2009 04:45 PM

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My husband also had lung mets and the Sutent got rid of them.  No recurrence in lungs at this time.  But Sutent pushed him into congestive heart failure and he was taken off.  He's currently in a clinical trial for solid tumors that has show a reduction in the tumor sizes after only two cycles.  Sutent did not work on his kidney or pancreatic tumors.  He is also Stage IV RCC.

RE: Just hit stage 4 - Sutent?

by jimigtrslingin on Wed Nov 18, 2009 04:45 PM

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On Nov 08, 2009 3:48 AM Iowaguy wrote:

I am 50 and was diagnosed five years ago with RCC in my left kidney. Surgery removed the kidney and I have been followed annually. This year we found metastisis to my lower lobe, left lung and removed a small tumor recently through a VATS procedure on 10/22/2009.

Now my PET and MRI are clear but my oncologist would like to use Sutent Prophylacticaly in case their are some microscopic particles that we can't see on the scans.

Anyone in a simliar situation? What can I expect with this drug?

Hi there,

I'm not sure what "Prophylacticaly" means? I have been taking 50mgs of sutent in pill form for about 2 months now. I'm 49, in decent shape, and aside from some major gas sometimes, changed taste buds, some high blood pressure,,it's been quite reasonable on the side effects.

I don't know what data your Oncologist is seeing/using,,,to determine the probability of bad particles still in your system, and how effective Sutent would be if so.  RCC is sometimes a very non cool Gremlin like cancer, that pops up when you have been doing well for months/years when you least expect it.  I'm sure many Oncologists would be happy with your clear scan,,and prefer a wait and see approach. I don't know.  Did you do the Hi dose IL-2 5 years ago?  I'll tell you this much,,Sutent is a walk in the park compared to that,,in my case.

we can talk anytime,

good luck! Stay positive,,,

 

RE: Just hit stage 4 - Sutent?

by Iowaguy on Fri Nov 20, 2009 03:18 AM

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Thanks for the reply, just took my first 50mg dose today. My oncologist specializes in RCC and has several patients with good outcomes in a sutent study. Mainly wants to prevent a reoccurence if at all possible.

May work, may not. I feel lucky that I was followed closely by my urologist for five years. Praying that this will work and hope for a similar experience to yours. Thanks. Frank

RE: Just hit stage 4 - Sutent?

by choctawmom on Fri Nov 20, 2009 03:33 AM

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I have been told that when the scan comes up clear they like to do "chemo" to be sure they get all the small stuff not showing up.  Kinda like a dishwasher.  You wash the dishes off before putting them in and then the dishwasher cleans up what is leftover.  Sutent and I did not get along very nicely together.  I took it 8 months.  Side effects different each time. I was unable to take the 50 mg and was 37.5 for awhile.  I am now on Afinitor and already seeing results. My tumor is large on the para trachea. it affects swallowing and breathing.  Hang in there and always keep a positive attitude.  There is someone else who is always worse than you.  Easier to do on somedays than others but it is how I keep going.

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