Metastasis RCC

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Metastasis RCC

by reach2rak on Sat Jan 05, 2019 02:55 PM

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Hi, Removed my left kidney due RCC. It's grade 4 cancer stage is p2aN1Mo.. After 1 month I had PET scan no cancer seen.. Should we go for adjuvent therapy with sutent.. 

RE: Metastasis RCC

by Hayrus on Fri Jan 11, 2019 07:06 AM

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On Jan 05, 2019 2:55 PM reach2rak wrote:

Hi, Removed my left kidney due RCC. It's grade 4 cancer stage is p2aN1Mo.. After 1 month I had PET scan no cancer seen.. Should we go for adjuvent therapy with sutent.. 

My mother had RCC and removed one kidney with 7cm tumour. They used Sutent after recurrence, not before for adjuvant but i wonder if it would better since the cancer came back in 5 years. I suggest you to be very conscious about recurrence & keep good follow-up/scanning regularly. We missed recurrence about 2 years which started from where the kidney cut-off at the operation (the doctors thought it is just the part of bowel but actually tumour was growing again). Sutent had strong side effects to my mother so it might not be affordable to use it just for adjuvant therapy. But of course may be doctors use much smaller dosage for adjuvant which might not be disturbing daily life much for you. My mom died 2012, after 10 years of diagnosis. Sutent helped much for remission however being aware of recurrance is very important, she would be still alive today if we could catch recurrence earlier. Good luck, you are in very lucky stage now and keep going with utmost care of regular check-ups.

RE: Metastasis RCC

by reach2rak on Fri Jan 11, 2019 08:29 AM

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Thank you hayrus..let us hope for the best

RE: Metastasis RCC

by tomretired on Fri Jan 11, 2019 05:47 PM

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I had my left kidney and adrenal gland removed 2/15/18. My oncologist explained that sutent was the only recommended adjuvent treatment. The only other option was to do nothing. I started sutnet 4/15/18, 50 mg once a day. 14 days on and 7 off. Side effects have been minimal. Diarrhea and heartburn are controlled with OTC drugs. My blood pressure went up so I started on lisinopril which works well on the minimum doseage. No mouth sores or peeling skin on the hands or feet. Toward the end of the 14 days I lose my appetite and feel a bit more fatique but nothing earth shattering. So far my scans have all been clear. I was worried about the side effects but they really aren't that bad. I'm 61 and have returned to running (not as fast as before) and nothing in my daily activies has changed. Maybe a few more naps but that's about it. Hope this helps.

RE: Metastasis RCC

by reach2rak on Sat Jan 12, 2019 04:36 PM

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On Jan 11, 2019 5:47 PM tomretired wrote:

I had my left kidney and adrenal gland removed 2/15/18. My oncologist explained that sutent was the only recommended adjuvent treatment. The only other option was to do nothing. I started sutnet 4/15/18, 50 mg once a day. 14 days on and 7 off. Side effects have been minimal. Diarrhea and heartburn are controlled with OTC drugs. My blood pressure went up so I started on lisinopril which works well on the minimum doseage. No mouth sores or peeling skin on the hands or feet. Toward the end of the 14 days I lose my appetite and feel a bit more fatique but nothing earth shattering. So far my scans have all been clear. I was worried about the side effects but they really aren't that bad. I'm 61 and have returned to running (not as fast as before) and nothing in my daily activies has changed. Maybe a few more naps but that's about it. Hope this helps.

Hi Tom retired.. How many months you used sutent as adjuvent treatment?

RE: Metastasis RCC

by tomretired on Sun Jan 13, 2019 04:04 PM

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I've been on student for 9 months. It's a year long therapy.

RE: Metastasis RCC

by donsmrs on Sun Jan 13, 2019 05:41 PM

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The newest thing is to use immunotherapy and sometimes also a targeted therapy after RCC surgery, and before recurrence. Anytime you have surgery, your immune system suffers, immediately afterward, a prime occasion for any stray RCC cell to propagate. So it makes complete sense to stimulate the immune system to prevent that. Docs started doing this new practice  late last summer as a result of some big clinical trial. It was, as they called it, "a game changer."  If your onc isn't doing that, go to a bigger medical center and get an onc who specializes in RCC. It DOES matter.  Remember that it's your body and you DO have the final say. Make it an informed, "say." Also know that radiological missed diagnoses occur 30% more in small communities where they don't see enough cases to know what they are looking at. That happened to my husband 4 times (local population about 90,000)  until we quit having his scans anywhere else but at Mayo, the nearest really big medical center. Hope this helps!

RE: Metastasis RCC

by tomretired on Thu Feb 13, 2020 08:15 PM

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12 months and I’ve been stable for 2 years.

RE: Metastasis RCC

by eppsdc on Sat Feb 15, 2020 07:42 PM

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I am not the patient, I m the family member that has been the medical advocate. My SIL has gone through the RCC, left kidney removal, then nearly 5 years later cancer recurred. The oncologist suggested Sutent. She had the expected side affects, sores in mouth, skin peeling and pain in hands and feet, high blood pressure etc. They told us prognosis with the mRCC was 22-30 months. This week it has been 10 years. Last February the Sutent quit working, they tried all of the other last ditch treatments but they were so hard on her system it nearly killed her. She made the decision to stop treatments. She is doing well, yes the cancer is unabated but she has had 10 years she didn't expect to get. The Sutent worked and held that cancer at bay for nine full years. She is 73, she is happy to have been given the extra time she has had. We don't know what the future holds but for now she is doing well, living on her own and as she said yesterday, I don't think about it, I dont dwell on it. I don't care I am just living. She had excellant result with the Sutent, that's what I am saying.

RE: Metastasis RCC

by tomretired on Sat Feb 15, 2020 07:58 PM

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I’m glad to hear the Sutent kept the cancer at bay for so long. It gives people hope.
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