Stage IV Metastatic Urothelial Carcinoma (TCC)

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RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by orchestra47 on Thu Aug 02, 2018 04:37 PM

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Hello Everyone out there with Stage 4 TCC,

  I have Lynch Syndrome and was diagnosed with bilateral TCC into both renal pelvis, in Jan 2009. After replacement of both ureters with illeal, my right kidney was saved. Flash forward six months latyer and I had mets in liver, lungs, pelvis and left kidney. I was given 2 years to live. I was treated with carboplatin and gemzar for 5 months to help prolong my life. It is now 2018 and my oncologist at MD Anderson said that I am cured. She has no idea why I was spared and said she'd not heard of anyone surviving liver mets with stage 4 bilateral TCC. I used a totally integrated therapy and had (have) an aggressive will to live. I have survived 5 cancers so far, and continue to cycle, work out, and be optimistic about life. By the way, I've just celebrated my 71st birthday! I have a minimal support group and rely on my faith and will to live. I would be happy to correspond with anyone facing this horrid disease, who needs some support and encouragement from one who, has doubly "been there and done that". Life is beautiful. Never give up!My completer story is in 'Hope Never Dies" by Rick Shapiro.

Barb

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by Hasan80 on Thu Aug 02, 2018 04:45 PM

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Thank u for sharing your amazing story I really hope for the day when that true miracle comes around for me you are a inspiration of faith for me I pray for all that has a illness will be healed in the mighty name of Jesus!!!

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by lou285 on Thu Aug 02, 2018 09:45 PM

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On Aug 02, 2018 4:45 PM Hasan80 wrote:

Thank u for sharing your amazing story I really hope for the day when that true miracle comes around for me you are a inspiration of faith for me I pray for all that has a illness will be healed in the mighty name of Jesus!!!

Thank you so much. God bless.

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by DianaPB on Tue Feb 26, 2019 03:14 PM

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On Aug 02, 2018 4:37 PM orchestra47 wrote:

Hello Everyone out there with Stage 4 TCC,

  I have Lynch Syndrome and was diagnosed with bilateral TCC into both renal pelvis, in Jan 2009. After replacement of both ureters with illeal, my right kidney was saved. Flash forward six months latyer and I had mets in liver, lungs, pelvis and left kidney. I was given 2 years to live. I was treated with carboplatin and gemzar for 5 months to help prolong my life. It is now 2018 and my oncologist at MD Anderson said that I am cured. She has no idea why I was spared and said she'd not heard of anyone surviving liver mets with stage 4 bilateral TCC. I used a totally integrated therapy and had (have) an aggressive will to live. I have survived 5 cancers so far, and continue to cycle, work out, and be optimistic about life. By the way, I've just celebrated my 71st birthday! I have a minimal support group and rely on my faith and will to live. I would be happy to correspond with anyone facing this horrid disease, who needs some support and encouragement from one who, has doubly "been there and done that". Life is beautiful. Never give up!My completer story is in 'Hope Never Dies" by Rick Shapiro.

Barb

Hello Barb,

Thanks so much for sharing your story and I am moved by your brave fights against the diseases.

My husband got TCC Stage 4 and we are davastating and try to find oncoligists soon. You mentoined in you have used UCLA doctors and may I know the names of these doctors?

I appeaciate it very much.

Diana

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by Mike1954 on Wed Feb 27, 2019 02:11 PM

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Barb

Thanks for sharing.  What excellent news.  TCC is such a nasty cancer.  It is like living with a gun to your head.

Blessings to you.

Mike

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by peggyznd on Wed Feb 27, 2019 03:39 PM

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Dr. Brian Shuch at UCLA takes a special interest in the rarer version of kidney cancer, and is well-respected in the research community.  Do reach out to him.

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