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phila's Recent CancerCompass Activity

  • PhilA has created a new message board discussion

    More Tumors Needed! Several years ago, we sponsored a research study to investigate the urachal tumor DNA. Using leading edge technology, we are aiming to find commonalities that will lead to improved treatments and higher survival rates for urachal cancer patients. The problem is, few UC patients = low sample size and a less effective study. So we need your help. If you are a patient/survivor OR if you know of a fam...

    June 12 at 8:37 PM view discussion
    • PhilA has changed their profile photo
      April 19 at 4:02 PM
      • PhilA has replied to a post on the message board

        Hi Christina, I’m sorry to hear of your news. While I haven’t liaised with patients and doctors in the UK, I recently communicated with a French couple who sought treatment in France. Let me know if you’d like me to connect you. Phil

        April 05 at 8:03 PM view post
        • PhilA has replied to a post on the message board

          Yes, that’s me. I lead the Bikus Urachus team and we’ll be participating in our 6th ride to conquer cancer this July. You can find our more about us at www.urachalcancer.com Or on our ride page at www.conquercancer.ca/goto/bikusurachus2018 Always looking for more riders and to help others get fundraising initiatives off the ground. Phil

          March 18, 2018 view post
          • PhilA has replied to a post on the message board

            Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wonderi...

            March 11, 2018 view post
            • PhilA has replied to a post on the message board

              Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wonderi...

              March 11, 2018 view post
              • PhilA has replied to a post on the message board

                Call dr. Jonathan Rosenberg at Sloan Kettering in NYC. He is an oncologist and sees a lot of urachal cancer. He will refer you to the right surgeon. There is a surgeon at Sloan Kettering who does this.

                March 11, 2018 view post
                • PhilA has replied to a post on the message board

                  Hi Michael, I'm glad you have an appointment with Dr. Radtke.   I am a urachal cancer survivor.  My surgery date was Feb 2012.  The standard procedure is to remove the umbilicus whether or not there is any cancer that is seen.  That's what I had done.  I also chose to have chemo of cisplatin, taxol and ifosfamide. My regimen was different that the one given for standard adenocarcinoma becaus...

                  January 10, 2017 view post
                  • PhilA has replied to a post on the message board

                    Hi vtoole, After not checking this thread in a bit, I just logged in and I am shocked to hear your news.  It makes me more determined than ever to find some cure to this thing.  We are with you and here to help or just listen.   P

                    September 30, 2015 view post
                    • PhilA has replied to a post on the message board

                      The conference was really good.  I only stayed for the urachal cancer portion.  You can see pics on the Bikus Urachus facebook group page.  One thing that I didnt expect was that my team is putting together clinical guidelines for urachal cancer treatment in canada.  This is really important bc they are driving a discussion amongst all the GU medical oncologists in Canada about the best treatment ...

                      June 28, 2015 view post
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                      About phila

                      Patient
                      Bladder Cancer
                      Cancer Diagnosis, Cancer Treatments, Clinical Trials and Research, Diagnostic Imaging, Surgery

                      Diagnosed with Urachal Cancer.
                      Surgery on Feb 9, 2012
                      4cm tumor removed + urachus + belly button + dome of bladder

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