Recent Stage 4 Diagnosis

All,

I've been reading over the different messages that each of you have posted and am grateful that there seems to be light at the end of the tunnel for most of you.  My prayers are with you.

My mother was diagnosed this week with Urachal Adenocarcinoma.  Unfortunately it appears that her prognosis is not as hopeful as most of those I have read.  Her cancer has spread throughout the body; bladder, liver, lungs, lymphnodes, neck.  She has been told that there isn't much they can do.  She is in stage 4.  They did tell her that she could start chemo which would possibly shrink the size of the cancer and possibly stop it from spreading.

Has anyone heard of anyone that has had this cancer at this stage in so many areas with success with chemo or other options?  I have seen several messages that talk about this Dr. P in New York.  We are in Arizona but would be willing to travel there. If anyone feels it is worth the shot, please let me know.  If anyone is aware of any good facilities near Arizona or in Arizona please let me know.  I will take any and all advice or information.

God Bless all of you.

Sherri

On 4/14/2007 Fraggles wrote:

All,

I've been reading over the different messages that each of you have posted and am grateful that there seems to be light at the end of the tunnel for most of you.  My prayers are with you.

My mother was diagnosed this week with Urachal Adenocarcinoma.  Unfortunately it appears that her prognosis is not as hopeful as most of those I have read.  Her cancer has spread throughout the body; bladder, liver, lungs, lymphnodes, neck.  She has been told that there isn't much they can do.  She is in stage 4.  They did tell her that she could start chemo which would possibly shrink the size of the cancer and possibly stop it from spreading.

Has anyone heard of anyone that has had this cancer at this stage in so many areas with success with chemo or other options?  I have seen several messages that talk about this Dr. P in New York.  We are in Arizona but would be willing to travel there. If anyone feels it is worth the shot, please let me know.  If anyone is aware of any good facilities near Arizona or in Arizona please let me know.  I will take any and all advice or information.

God Bless all of you.

Sherri

Sorry to hear of your mothers health , but I know what it's like to have urachal cancer. I was dignosed this sept. and had on operation to have half my bladder removed and my belly button , the tumor was 7 cm. and had spread to one lymph at that point. I was then sent to a bigger cancer hosptial to get more treatments but I feel they took to long. They gave me CT scans MRI and after months of waiting they decied that more surgery was needed. They would remove the entire bladder this time and as many lymph nodes as they could. But it didn't happen they opened me up to find that the cancer had spread and they felt they would not be able to get it all!! They closed me up, and told me that chemo would be my only chance and hopefully it will work. They didn't give a stage for mine , but when I went to the chemo doc. they told once it has spread you have about a 1% chance you will be cured. They have no chemo for this cancer but I am on cisplatin and gemcitabine. I have only had one round and I am about to start my second this week. After this I will do a Ct scan to see if it is working and if not they will give me chemo used for bowel cancers.

I hope they find somethig that works for your mother and if you do go to dr. P in new York please lets us know because it is only through this web board I have been in contact with someone with the same cancer as me.

Good luck and God Bless

Christine

On 4/14/2007 Fraggles wrote:

All,

I've been reading over the different messages that each of you have posted and am grateful that there seems to be light at the end of the tunnel for most of you.  My prayers are with you.

My mother was diagnosed this week with Urachal Adenocarcinoma.  Unfortunately it appears that her prognosis is not as hopeful as most of those I have read.  Her cancer has spread throughout the body; bladder, liver, lungs, lymphnodes, neck.  She has been told that there isn't much they can do.  She is in stage 4.  They did tell her that she could start chemo which would possibly shrink the size of the cancer and possibly stop it from spreading.

Has anyone heard of anyone that has had this cancer at this stage in so many areas with success with chemo or other options?  I have seen several messages that talk about this Dr. P in New York.  We are in Arizona but would be willing to travel there. If anyone feels it is worth the shot, please let me know.  If anyone is aware of any good facilities near Arizona or in Arizona please let me know.  I will take any and all advice or information.

God Bless all of you.

Sherri

Sherri just thought I would add that maybe you should try putting urachal cancer in your subject line because it was only by accident that I click on it. I was shock it was about urachal cancer because that is the first thing I look for. You might get more responses if you used in your subect line!

I hope it helps  I know how hard it is to find help with this rare cancer

Christine

Christine,

Thank you for your reply.  I am so sorry to hear about your situation.  Most of the cases I have seen have been isolated to the bladder and honestly it has been very discouraging for me.  Although I have seen many posts about Dr. P when I checked the website for Columbia Presbyterian it did not appear that he was a specialist for this type but I guess he must be.  I also found a test/trial that is being done at MD Anderson in Houston and some of the requirements is that it has to be in more than the bladder.  The Physician in charge of the study is Arlene Siefker-Radtke and it is a Phase II Trial of 4 different drugs (5-Fluorouracil, Cisplatin, Gemcitabine, and Leucovorin).  My mom has had her first chemo and I believe it is Gemzar and Carbo Platin? Not sure on the second one.  If you want to take a look at the Study Summary you can go the MD Anderson website and search for Urachal.  The Summary/ Test ID is ID03-0111.

I am thinking about sending my mom's information to see if she qualifies for the study.  I'll grasp any possibility that comes our way.

Please let me know how things progress, I don't know how one deals with this kind of news when it is yourself, but I know how I'm dealing wih my mother's news and it's rough.  If there is any thing I can help share with you I will.  I believe in the power of prayer and believe in miracles.  I will keep you in mine.

Also, I don't know if you've checked into any of the nutritional information but I do have an Aunt who was able to cure her Uterine and colon cancer, stage 4 through chemo and Immunopower as well as a change in her diet. You may want to read about the Immunopower.  You should be able to find it online.  The book is called 'Beating Cancer with Nutrition' by Dr. Patrick Quillin.  My mom is going to start taking the Immunopower.  It is not cheap by any means but per my Aunt it made a world of difference in how her chemo helped her body also. 

My prayers are with you,

Sherri