Stage IV Metastatic Urothelial Carcinoma (TCC)

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Stage IV Metastatic Urothelial Carcinoma (TCC)

by elidrummer21 on Mon Dec 14, 2009 03:12 AM

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Hi everyone....I am a 32 year old male who was diagnosed with urothelial carcinoma a year ago. Had operations to remove my kidney as well as my uretur. Two months folowing the operations I was told it had moved into my lmyphnodes. Had unsuccesful cisciplatin/gemcitabine chemotherapy. This past wednesday I was told that it has now spread to my liver and I also have a spot on my left lung. I have two small children and have always wanted the Dr's to be honest with me about how long I have to live but I don't know if I buy what they are telling me. I have been very positive since my diagnosis telling friends and family " I'll be fine"...or "I'm not gonna let this kill me"....I have now realized that I may not die tomorrow or even a year from now, but eventually I will succomb to this terrible disease. Is there anyone out there that can reach out to me and we can talk about what u are going/gone through? I would really like to talk to someone else. I know that I am pretty much off the charts as far as being as young as I am and having this type of cancer (median age 68) but I have come to learn that cancer has no guidelines. I am enrolled in a clinical trial at MSKCC on a drug called RAD001 or Everolimus. Please...Please...if there is someone out there please take time and reach out to me. As you all know we are the only ones who know what we're going through. Thanks for reading my story...good luck to you all....

Brendan Smith, Hampton Bays, NY

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by Julib on Mon Dec 14, 2009 07:59 PM

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hi Brendan,

     please visit this website, it might interest you. The hospital is locted in China, I've heard about this approach way back but only few Hospitals here in US practice. Read all the testimonies and the kind of approach they have.

  http://www.orienttumor.com/en_asp_new/index.asp

these are not invasive approach.

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by Ike4y on Wed Dec 16, 2009 11:19 PM

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Hello:

Hmm, Urothelial cancer or Transitional Cell Carcinoma I believe is related to bladder cancer. I think it occurs in the renal pelvis rather than the kidney proper. (It can effect the whole ureter and that is why they remove it as well as the kidney.)

You might want to place your post on the bladder cancer page and perhaps get more hits.

Also, I believe there is some sensitivity to chemo in this type of cancer? Have they suggested something like BCG or other bladder cancer type of treatments? I know you had cisplatin.

Research your options and don't believe statistics. You have youth on your side and new treatments come out all the time. I too was treated at Sloan in the past. Don't limit yourself to available options at only one institution. Stay positive, always one step ahead, and have plan B.

Good luck and God bless:

Krys

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by rsimmons on Sat Jun 19, 2010 03:17 PM

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Brendan

My husband has stage IV urothelial cancer (TCC). 

How are you doing? 

 

Rebecca  

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by robertrester on Fri Jun 25, 2010 08:51 PM

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On Dec 14, 2009 3:12 AM elidrummer21 wrote:

Hi everyone....I am a 32 year old male who was diagnosed with urothelial carcinoma a year ago. Had operations to remove my kidney as well as my uretur. Two months folowing the operations I was told it had moved into my lmyphnodes. Had unsuccesful cisciplatin/gemcitabine chemotherapy. This past wednesday I was told that it has now spread to my liver and I also have a spot on my left lung. I have two small children and have always wanted the Dr's to be honest with me about how long I have to live but I don't know if I buy what they are telling me. I have been very positive since my diagnosis telling friends and family " I'll be fine"...or "I'm not gonna let this kill me"....I have now realized that I may not die tomorrow or even a year from now, but eventually I will succomb to this terrible disease. Is there anyone out there that can reach out to me and we can talk about what u are going/gone through? I would really like to talk to someone else. I know that I am pretty much off the charts as far as being as young as I am and having this type of cancer (median age 68) but I have come to learn that cancer has no guidelines. I am enrolled in a clinical trial at MSKCC on a drug called RAD001 or Everolimus. Please...Please...if there is someone out there please take time and reach out to me. As you all know we are the only ones who know what we're going through. Thanks for reading my story...good luck to you all....

Brendan Smith, Hampton Bays, NY

Hi Brendan,

My name is Robert and I'm 53 years old with stage four bladder cancer TCC. I started off at age 49 with gross hemeturia and several TURBS to remove the tumor. I opted to go with BCG instead of bladder removal. Two and a half years later after many clean scopes I had gross hemeturia again and it had gone to the upper tract at the ureter and renal pelvis so a nephrectomy followed. Post op scans after three months showed it had gone to my adrenal gland. Cisplatin/ Gemcitibine followed and appeared successful. Six months later major pain and a scan revealed a large hematoma in my right adrenal...another large complecated surgery followed. Four weeks later cancer was pretty much everywhere...left adrenal, liver, both lungs, plueral fluid and abdominal cavity. Started immediately with Carboplatin/Gemcitibine. Made it through 5 cycles and became anemic and low platelet counts requiring transfusions. Stopped the Chemo. Subsequent scans show only one tumor now in my liver...doctors are scratching their heads with the response I've had...wow. Am on Tarceva now in pill form to try and keep the tumor at bay. Working so far...keep up the fight dude you never know what's going to work. Good Luck and God Bless!

Doctor told me in November I had six weeks..that was seven months ago...ha!

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by SandraLambert on Thu Aug 19, 2010 02:52 PM

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Hi, My boyfriend is going throu the same thing you are. I wanted to see how the RAD001 was working for you.

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by jenniatt23 on Sat Mar 10, 2012 12:07 AM

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Hi.. my dad was just diagnosed with stage 4 urothelial transitional cell carcinoma, the cancer started on the tube and spread to form a tumor in the kidney and then spread to the limphnodes and the lungs. We have an appointment at Sloan next week to check out our options for chemo.

I am so scared that I may lose him. Do you think he will be ok? What do you reccomend? I want to give him hope but they say it can't be cured at this point and that we are only going to be able to make him comfortable for as long as that may be. They don't want to say how long. but online it says he wont live longer than 5 years if he even gets that far. I am freaking out, I feel like I can't breathe. I need help. Please tell me what to expect and what his best chances are. What do I do to help him live? please help me..

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by mrbuck on Sat Mar 10, 2012 04:58 AM

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Please don't freak out. It is definitely very hard on the family and caregivers of persons with cancer but as my husband ( who has rrc) and I prefer to say, there are many people living with harsh health issues so cancer is not the only thing that is so worrysome.

Now remember this, everyday there are new developments in the treatment of cancer - new drugs, combinations of drugs and even now trials on a vaccine to treat most cancers.

We are living each day to the best that we can and certainly hope that there will be treatments to help everyone.

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by hkelly on Thu Oct 29, 2015 11:33 PM

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On Dec 14, 2009 3:12 AM elidrummer21 wrote:

Hi everyone....I am a 32 year old male who was diagnosed with urothelial carcinoma a year ago. Had operations to remove my kidney as well as my uretur. Two months folowing the operations I was told it had moved into my lmyphnodes. Had unsuccesful cisciplatin/gemcitabine chemotherapy. This past wednesday I was told that it has now spread to my liver and I also have a spot on my left lung. I have two small children and have always wanted the Dr's to be honest with me about how long I have to live but I don't know if I buy what they are telling me. I have been very positive since my diagnosis telling friends and family " I'll be fine"...or "I'm not gonna let this kill me"....I have now realized that I may not die tomorrow or even a year from now, but eventually I will succomb to this terrible disease. Is there anyone out there that can reach out to me and we can talk about what u are going/gone through? I would really like to talk to someone else. I know that I am pretty much off the charts as far as being as young as I am and having this type of cancer (median age 68) but I have come to learn that cancer has no guidelines. I am enrolled in a clinical trial at MSKCC on a drug called RAD001 or Everolimus. Please...Please...if there is someone out there please take time and reach out to me. As you all know we are the only ones who know what we're going through. Thanks for reading my story...good luck to you all....

Brendan Smith, Hampton Bays, NY

Brendan, My husband is 47 years old and was diagnosed with the same cancer and it seems to have gone the same route as yours has. We have been fighting to beat this and live. We just left MSKCC in Late September this year was there from late July when my husband had gotten down to 135lbs. They got him back up in weight and started the Tri chemo. We couldn't stay due to the winter coming (we're from Idaho) we are now getting treatment at Cancer Treatment Centers of America in Chicago. They are staring him on immunotherapy after radiating (x10) his hip pelvis area where the tumors have continued to spread. I am praying you are doing well and hope that you can message me back. I am desperate to find someone who isn't in there 60's or 70's that is fighting this strain of cancer so we can take from each other's treat,net and maybe learn that one is working better then another or may know of other treatments that are working. They are looking at Pd1 Ab nivolumab immunotherapy for my husband. I hope you get this and I hear from you and that you are beating it with the immunotherapy. All our best, God bless, Kelly & Julia Hyde

RE: Stage IV Metastatic Urothelial Carcinoma (TCC)

by WCB555 on Fri Oct 30, 2015 01:27 AM

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On Oct 29, 2015 11:33 PM hkelly wrote:

On Dec 14, 2009 3:12 AM elidrummer21 wrote:

Hi everyone....I am a 32 year old male who was diagnosed with urothelial carcinoma a year ago. Had operations to remove my kidney as well as my uretur. Two months folowing the operations I was told it had moved into my lmyphnodes. Had unsuccesful cisciplatin/gemcitabine chemotherapy. This past wednesday I was told that it has now spread to my liver and I also have a spot on my left lung. I have two small children and have always wanted the Dr's to be honest with me about how long I have to live but I don't know if I buy what they are telling me. I have been very positive since my diagnosis telling friends and family " I'll be fine"...or "I'm not gonna let this kill me"....I have now realized that I may not die tomorrow or even a year from now, but eventually I will succomb to this terrible disease. Is there anyone out there that can reach out to me and we can talk about what u are going/gone through? I would really like to talk to someone else. I know that I am pretty much off the charts as far as being as young as I am and having this type of cancer (median age 68) but I have come to learn that cancer has no guidelines. I am enrolled in a clinical trial at MSKCC on a drug called RAD001 or Everolimus. Please...Please...if there is someone out there please take time and reach out to me. As you all know we are the only ones who know what we're going through. Thanks for reading my story...good luck to you all....

Brendan Smith, Hampton Bays, NY

Brendan, My husband is 47 years old and was diagnosed with the same cancer and it seems to have gone the same route as yours has. We have been fighting to beat this and live. We just left MSKCC in Late September this year was there from late July when my husband had gotten down to 135lbs. They got him back up in weight and started the Tri chemo. We couldn't stay due to the winter coming (we're from Idaho) we are now getting treatment at Cancer Treatment Centers of America in Chicago. They are staring him on immunotherapy after radiating (x10) his hip pelvis area where the tumors have continued to spread. I am praying you are doing well and hope that you can message me back. I am desperate to find someone who isn't in there 60's or 70's that is fighting this strain of cancer so we can take from each other's treat,net and maybe learn that one is working better then another or may know of other treatments that are working. They are looking at Pd1 Ab nivolumab immunotherapy for my husband. I hope you get this and I hear from you and that you are beating it with the immunotherapy. All our best, God bless, Kelly & Julia Hyde
Assuming he has the markers to match the immunotherapy drug clinical trial you should get on it ASAP yesterday. The results are amazing.
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