Re:urachal adenocarcinoma

9 years 11 months ago #38941 by dixie5
Re:urachal adenocarcinoma was created by dixie5
Hello to one and all

Hope you are enjoying one of life's better days.

Due to unexpected developments I need to hear from anyone who has tried a chemotherapy only approach to UA or indeed anyone that has information on the same subject please.

My Mum is an awe of my continuing positivity in the light of recent news - but as I said to her - if you are thrown into the deep end of the swimming pool you don't let yourself sink and start counting the tiles - you swim for the surface

any help to keep above the waves appreciated
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all the best to everyone

dixie

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9 years 11 months ago #38945 by CatherineH
Replied by CatherineH on topic Re:urachal adenocarcinoma
Hello again, Dixie. Sounds like much has happened since your last posting here and your doctors have taken a different approach.

I'm sorry that I don't have any info about chemo personally, but perhaps others can point you to another source of info. I know when I was diagnosed (no urachal involvement) there was just so little info out there on bladder adenocarcinomas. It is very frustrating to say the least.

I'm with your Mum... your sense of humor and attitude are awesome, as are you! Love your little guy up there hopping over all those waves!

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 11 months ago #38950 by dixie5
Replied by dixie5 on topic Re:urachal adenocarcinoma
Hello Catherine

thanks for your kind thoughts - yes a lot has happened since I last posted - it makes for grim reading but suffice to say I am determined to stay positive - its doubtful that I will be offered any treatment - I have been told not to build my hopes up - however I am clinging onto the thought that they will rake up an experimental protocol from somewhere as its my best/only chance against this UA. Will know one way or the other next week - I should have worn my bullet proof vest to my consultation - hearing those words was like being verbally shot - its not me I am concerned about - its my family - it has hit them hard.



How are things with you at the moment?

all the best Dixie

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9 years 11 months ago #38952 by CatherineH
Replied by CatherineH on topic Re:urachal adenocarcinoma
Hi Dixie... Thanks for asking about me, but I took Mike's (mmc) advice that I am doing fine until someone tells me differently! My next checkup is on October 10th so I'll let the doctor tell me then how I'm doing.

Seriously... a bulletproof vest might have lessened the shock of hearing that kind of news. I'm so sorry to hear that the doctors have not been able to recommend any other options for you. Are there clinical trials over there to look into?

When do you meet with your doctor again?

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 11 months ago - 9 years 11 months ago #38963 by CatherineH
Replied by CatherineH on topic Re:urachal adenocarcinoma
Hi again Dixie... I have done some searching and found a website called CancerCompass. I don't know anything about it but it has a discussion forum much like we do.

I found a thread that goes from 2005 up through this year where several people discussed their urachal adenocarcinomas. It is the most discussion I have found to date about this cancer. Also, there are other threads from a few other people as well. Topics range to surgical options to several who have gone through chemo.

If you want to explore more there, just type urachal or adenocarcinoma into the search box at the top. You don't have to join to read the posts, only if you wish to comment yourself.

Urachal Cancer Survivor thread

My best to you and your Mum,
Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 11 months ago #38965 by dixie5
Replied by dixie5 on topic Re:urachal adenocarcinoma
Hello Catherine

thanks for your input - I have investigated the link and posted there hoping someone will come up with an idea.

That attitude you expressed is so right - doing ok till someone tells you otherwise - that is one of the things that helped me the morning following the bombshell - I realised that although the news was worse - physically I felt exactly the same - the power of a positive mind is all important.

take care off to catch up on some ZZZZ's
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dixie

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