My husband was diagnosed with urachal adenocarcinoma 2 1/2 years ago at the age of 58. It was basically Stage 4. We went to a Dallas urological oncologist - who was a surgeon - on the advice of my husband's long time internist in Dallas. We were in such a state of shock and had no idea what the right thing to do was, so we simply followed his advice. My husband went in for multiple MRI's CT scans, etc. and it was decided that he should have a partial cystectomy with a resection. My husband did well after surgery - for a few months - and was back at work after a couple of weeks; but we then began to notice an enlarging of his stomache for no apparent reason (his surgery was in January and the physical changes began in May - so 4 months). We kept returning to the surgeon and asked what could be happening. He "poo - pooed" us saying it was "post surgical changes." I had done exhaustive research online for this type of cancer and suggested the cancer had metastasized. I asked the doctor about the possibility of follow up chemo as indicated by MD Anderson trials in Houston. Again we felt "poo-pooed" and were told by this doctor, "Chemo doesn't work for this type of cancer and is brutal." We made contact with MDA and eventually my husband agreed to see the MDA's doctor in July - we waited 2 months too long, in my opinioin. Long story short, MDA told us that it appeared that my husband's disease had progressed and that we needed to consider systemic therapy which Dr. Rathke Seifert of MDA had "discovered" as the only possible chemo treatment at this point. Our doctor at MDA, a partner with Dr. Seifert, has been an incredible man and has saved my husband's life. My husband underwent 6 rounds of a grueling chemo regimen - Cisplatin, Gemcidibine, Fluoricil (F5) and Leucovorin - every three weeks that lasted from a Wed through the following Tuesday 24 hours a day round the clock. After two rounds of this grueling treatment, 6 weeks, our doctor did not like the results - no evidence of the cancer receding on the CT scan, so he started my husband on a drug approved by the FDA for colon cancer. (Someone on this message board has already mentioned that this urachal adenocarcinoma cancer cell is very similar to the colon cancer cell). The doctor added this drug, Panumitab, to the next 4 chemo treatments. Although my husband lost 30 pounds during the process of the 4 1/2 months of this grueling treatment, and seemed that he was waning quickly, he had a remarkable response to the addition of this drug, and after the next 3 months, the CT scan showed a recession of the cancer on his peritoneum. (After the surgery, it appeared the cancer had spread to his peritoneum and his lungs.) The doc wanted to continue the chemo therapy for an additional 12 months, however, my husband felt that he would not survive any more of these grueling treatments. So, his doc agreed to simply use the colon cancer drug. He has continued this treatment for the past 1 1/2 years every 3 weeks at MDA. His last CT scan showed no sign of the cancer anywhere. Soon, our doc will give him a "chemo holiday" and will follow him for any signs of cancer recurrence. In the mean time, my husband gained all of his lost weight back, has continued working full time and was able to be at our son's graduation from college this past December. Our lives have returned to a sort of "normal" and it has been a blessing to have found this doctor at MDA. It appears that only 37 - 50% of people survie this cancer for 5 years. Most die within the first 1 - 2 years. Our hope is that this "incurable" cancer will have been somewhat disabled by a two year course of this colon cancer drug. If anyone is out there who wants hope, this is your hope. My husband was a "goner" according to MDA's doctor 2 1/2 years ago with a wing and a prayer that he might respond and get a 6 month remission/reprieve before the cancer would return. It's been 2 1/2 years and he is alive and living life.