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vtoole's Recent CancerCompass Activity

  • vtoole has replied to a post on the message board

    Hi Merel, I highly recommend Dr. Arlene Seifert Radtke at MD Anerson. Dr Radkte’s team 713-745-7575. I have not had personal contact/experience with Sloan Kettering but have seen several people highly recommend a Dr. Rosenberg there for this cancer. There are immunotherapy trials/treatments available, but he sure that you are tested for genetic abberations that actually will likely respond well to them. ...

    March 28 at 6:45 PM view post
    • vtoole has replied to a post on the message board

      I was wondering the same thing. I recall someone (was it you?) who was doing “bikus urachas?” I think it would be wonderful to do a fund raiser for this rate and mostly unchartered disease.

      March 11 at 5:35 PM view post
      • vtoole has replied to a post on the message board

        Sloan Kettering in NY is very familiar with this cancer. I believe the doctor’s name there is Rosenbeeg. That hospital is one of the best in the country for cancer and does has experience with it! Good luck!

        February 24 at 12:03 AM view post
        • vtoole has replied to a post on the message board

          This is a site for people with urachal adenocarcinoma!

          February 21 at 5:12 PM view post
          • vtoole has replied to a post on the message board

            Well, then, I am so grateful that they will follow the guidelines of MDAnderson!!! I went back on the thread and noticed I had been in touch with you before and had recommended MDA. I am grateful you can combine the two doctors/hospitals. That’s really how our medical system should work! I wish the very best for your son and your husband. Most especially, I am thinking of you in the difficult role of caretaker. Best ...

            January 02 at 6:01 PM view post
            • vtoole has replied to a post on the message board

              Hello Mark’s Mom, My goodness, you surely have your hands more than full. This caretaking of two - not just one - people must be so hard on you! My thoughts are with you. My husband had the partial cystectomy at the same time as the en bloc resection and he was 59. He was back at work part time within a week...Your son should be doing vwell within short order. They had my husband up and walking the day af...

              January 02 at 1:58 AM view post
              • vtoole has replied to a post on the message board

                Limerick, I am sorry to find you on this page. It sounds like you have done a lot of research. I’m wondering if you’ve gone back in these 90+ pages to read the wealth of information contained herein with regard to treatments, including experimental and immunotherapy? It’s a treasure trove of good info. My husband underwent the same surgery(ies) chemo treatments as you (where did you have your treatments?) and...

                December 12, 2017 view post
                • vtoole has replied to a post on the message board

                  Hi Mark’s mom, I am so deeply sorry for this erroneous procedure. This cancer is so very rare, that the majority of doctors truly do not know what to do. You will be in excellent hands at MDAnderdon. They will most likely recommend a second surgery to do an “en bloc resection” (removal of the umbilical cord and belly button) with surrounding lymph nodes taken out to see if “margins are clear.” They will possibly r...

                  November 26, 2017 view post
                  • vtoole has replied to a post on the message board

                    Dr Radkte’s team 713-745-7575

                    November 18, 2017 view post
                    • vtoole has replied to a post on the message board

                      christobel...so sorry to hear this news. Has your doctor conferred with Dr. Arlene Seifker Radtke at MDAnderson in Houston, Texas?

                      November 18, 2017 view post
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                      About vtoole

                      Caregiver
                      Bladder Cancer
                      Chemotherapy, Clinical Trials and Research, Genetics, Naturopathic Medicine, Radiation, Recipes

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