Urachal Adenocarcinoma

Screen Name: Martha
Date: May 27th 2005

To Urachal Adenocarcinoma victims:

I was diagnosed with urachal adenocarcinoma cancer in June, 2003.
I have had 2 bladder resection surgeries to date, removing most of my bladder.
These surgeries removed the tumors present both times, but didn't keep them away permanently. Unfortunately after the last surgery, another tumor developed very quickly and aggressively. Because of the size of it, my Doctors were leery to try and remove it with more surgery. They decided I should under go Radiation therapy as well as Chemo treatments of Sysplatimun and 5FU. This happened in the December 2004 time frame.
The treatments helped reduce the size of the tumor to a point where my doctors felt it might be removable. Multiple CT scan gave us visibility to the tumor, but it was not clear to what the tumor was attached to, or if it potentially only pushing against other organs. The only option for certain was to remove this thing totally encapsulated.

I underwent another round of surgery May 19th 2005 with the removal objective. I was prepped for the worst, meaning that if it was attached to other organs they would have to be removed, this potentially meant a Colostomy and a Urostomy. This major surgery would only be done if they felt a full clean removal was possible and if it hadn't spread.

Upon opening me up, active cancer nodules were visible now in the stomach muscle, meaning it had spread.
They aborted the mission and I was closed up.

To fellow Urachal Adenocarcinoma cancer warriors, I am coming down to my last options and hope....I'm searching for any glimmer of hope.
Some of the letter posted have referred to a chemo agent called "Gemzar". Can anyone tell me more about it or, perhaps let me know of any other drugs that have been tried.
I would really appreciate any help you can provide.
Sincerely,
Martha E.

Martha, you are going thru a lot, our prayers are with you. I also had a partial cystoscopy, but the bladder was never involved. Cancer did get into pelvic lymph nodes requiring a stent between the kidney and bladder, and after Gemzar and several other chemo regimes that seems to be under control. In Feb we learned cancer had metastazized to lungs, with small subcentimeter nodules and also to 8th rib. That has just been removed by 10 radiation treatments, but other small lesions are present. I am also on the 2d dose of Alimta. Radiation caused some esaupogitis (sp) and that has about disappeared. Small price to pay!
I am very fatigued, have no energy, have had aranes and procrit. blood work is low but within markers due to chemo. I feel we are in front of this, and have been fighting 2 1/2 years. I am in central Florida, under care of Mayo Clinic in Jacksonville. Have you gotten 2d opinions?
Let me know how you are doing. Take care.

Martha, I went and looked up what I have had for chemo.
CPT-11/F5u/levcovorin; taxol and carboplatin; gemcitibine and cisplatin; methotrexate; taxotere; and now alimta.

For the first 2 years I was able to work part time and really had no side affects, but that changed in March, when all the toxicity caught up. I wish I had some answers for you. I do not know where you are but I would consider contacting the Mayo Clinic in Arizona, Minnesota, or Jacksonville FL.

Again, Good Luck. JIM H

Martha -

I think Jim has given you the best advice and options that I have seen, and his knowledge is very current which is great. Since what we have is so rare, there isn't any kind of standard protocol of which I'm aware. I wish that I had a more concrete response, but since my surgery was 10.5 years ago and I didn't have chemo, I have no pharmaceutical suggestions.

I do know that prayer works, whatever religion you have. Having worked at a major university college of medicine during my seige, I have seen reports of improvement with many different conditions...

I will pray for you, and would talk with you as well. I remember many cloudy days when a friend who understood would have been helpful as an outlet and a support.

I'm here as needed. Let me know if you would like to talk.

Craig

Martha -

 My father has had bladder cancer on/off for 10 years now.  A couple of years ago, the City of Hope hospital in Duarte, CA removed his bladder and made him a new one out of a piece of intestine.  He did great until last year when they found a tumor in his kidney.  Unfortunately, it appears that we had waited too long to get him that new bladder and some of the bladder cancer spread up the tube to the kidney.  The kidney was removed but a small amount of the tumor had moved outside of the kidney.  He now has secondary bone cancer throughout the pelvis, spine, rib cage.  It may have been too late for my Dad but I feel like if he had gotten the new bladder pouch earlier, we may have had better results.

 

I hope this information helps you.  Best of luck.

 

Nicole