Urachal cancer

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Urachal cancer

by searcher2910 on Mon Feb 06, 2017 11:19 AM

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Hi there, (hopefully am posting this on the right forum)

My auntie has been diagnosed with urachal cancer in Sydney, Australia. She underwent a 10-hr surgery in Dec 2016 and has just been told that they can't do anything for her.  She started palliative chemo today.  Her surgeon is being very unhelpful with our questions and need a second opinion as to her treatment but have been told that it's very rare and they haven't had a case in Australia!!!  I guess am looking for anything, a ray of hope somewhere...

RE: Urachal cancer

by Steve48 on Wed Feb 08, 2017 06:44 AM

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Hi Unfortunately your aunt is not the only one in Austraila, I am from Brisbane and was diagnosed back in Dec 2013, I was told the same thing and my hospital had never had a case in its history at the time there was not another case in Australia, how advanced was your aunts cancer and what chemo treatment have they got her on, my hospital contacted the MD Anderson cancer clinic in the states, they have had a couple of dozen cases over the years and there is a Dr there Arlene Radke that came up with a chemo mix that had some success with this type of cancer, it is very similar to colon cancer in its make up, I had 6 months of chemo and 2 operations and touch wood am still here.

RE: Urachal cancer

by searcher2910 on Wed Sep 27, 2017 01:28 AM

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On Feb 08, 2017 6:44 AM Steve48 wrote:

Hi Unfortunately your aunt is not the only one in Austraila, I am from Brisbane and was diagnosed back in Dec 2013, I was told the same thing and my hospital had never had a case in its history at the time there was not another case in Australia, how advanced was your aunts cancer and what chemo treatment have they got her on, my hospital contacted the MD Anderson cancer clinic in the states, they have had a couple of dozen cases over the years and there is a Dr there Arlene Radke that came up with a chemo mix that had some success with this type of cancer, it is very similar to colon cancer in its make up, I had 6 months of chemo and 2 operations and touch wood am still here.

 Hi Steve48

It's been a while since I've posted.  Am very happy to report that after 6 rounds (I think) of chemo, my auntie is now in remission.  The side efffects of her chemo is that her nerves are shot - she can't really grip with her arms and her feet almost cannot hold her weight.  However, we're all grateful and are not complaining.  Hope you're doing well.

RE: Urachal cancer

by Limarick on Tue Dec 12, 2017 03:35 AM

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On Sep 27, 2017 1:28 AM searcher2910 wrote:

On Feb 08, 2017 6:44 AM Steve48 wrote:

Hi Unfortunately your aunt is not the only one in Austraila, I am from Brisbane and was diagnosed back in Dec 2013, I was told the same thing and my hospital had never had a case in its history at the time there was not another case in Australia, how advanced was your aunts cancer and what chemo treatment have they got her on, my hospital contacted the MD Anderson cancer clinic in the states, they have had a couple of dozen cases over the years and there is a Dr there Arlene Radke that came up with a chemo mix that had some success with this type of cancer, it is very similar to colon cancer in its make up, I had 6 months of chemo and 2 operations and touch wood am still here.

 Hi Steve48

It's been a while since I've posted.  Am very happy to report that after 6 rounds (I think) of chemo, my auntie is now in remission.  The side efffects of her chemo is that her nerves are shot - she can't really grip with her arms and her feet almost cannot hold her weight.  However, we're all grateful and are not complaining.  Hope you're doing well.

Hello searcher2910, forgive my intrusion.  I have been researching the internet for more information on the disease, as I have it too.  I was diagnosed in October 2016.  I have had the usual surgery and chemothrerapy and now supposedly in "remission" .. but time will tell.

There is another site: https://www.cancercompass.com/message-board/message/all,1991

which is heavily populated with lots of people going through the same thing, which may give you more information.

I am so pleased that your aunt is in remission. The chemotherapeutic drugs do cause peripheral nerve damage. Hopefully over time, there will be some recovery as the nerves repair.

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