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aus6321's Recent CancerCompass Activity

  • aus6321 has replied to a post on the message board

    How old is he?  I have to admit, sometimes I think there is a PTSD associated with a whipple surgery.  I don't think you can really 'recover' mentally from a whipple survery... just move on. On good days, I sometimes forget my life is affected by PC.  On bad days, I'll cry when dropping my daughter off thinking I won't see her graduate college or get married.  It's different for everyone, I sup...

    October 20 at 3:09 AM view post
    • aus6321 has replied to a post on the message board

      After my whipple, I did notice a ridge under my scar that bulged outwards.  However, I think it was where the surgeon had sewn together my abdominal muscles to make a good connection.  To be honest, the "surface" pain was only a drop in the bucket and was minor compared to the pain below. How long has it been since your whipple?

      October 20 at 3:02 AM view post
      • aus6321 has replied to a post on the message board

        Did you ever find out what was going on inside of you?

        April 14 at 5:39 AM view post
        • aus6321 has replied to a post on the message board

          You're not the only one in the country with this cancer.  If you are dealing with a poorly differentiated tumor, maybe you can see if there's a treatment option in PRRT. http://prrtinfo.org/ The octreotide scan can give the oncologist some insight on whether or not you are a good candidate for PRRT.  The gallium (DOTATATE) scan can show the tumor more clearly than an octreo-scan, however, it is not yet ava...

          April 14 at 5:38 AM view post
          • aus6321 has replied to a post on the message board

            You can get a CT scan of your midsection to see if there's anything growing there that doesn't belong.  If the radiologist can ID something worth investigating, a gastro doc might be able to get a sample for biopsy.

            April 14 at 5:32 AM view post
            • aus6321 has replied to a post on the message board

              Have you had CT scans of your midsection to see if anything lights up that doesn't the doesn't belong there ?

              April 14 at 5:30 AM view post
              • aus6321 has replied to a post on the message board

                There is also a trial going on at Excel Diagnostics in Houston, TX.  If you have had an octreotide scan and your tumor shows good uptake, PRRT is definitely something to consider.

                April 14 at 5:25 AM view post
                • aus6321 has replied to a post on the message board

                  Have the oncologists tried something like Affinitor or Sutent?  These are drugs that stop blood vessels from forming close to NET's thereby 'starving' the tumors.  I think these two drugs are mainly for use with NET's. There's a chemo combo called 'CAPTEM.'  It's a combination of Capecitabine and temozolomide.  I read a paper on it... there's supposed to be something in the combination of the t...

                  February 15 at 6:09 AM view post
                  • aus6321 has replied to a post on the message board

                    Could you tell us what tests your doctor has prescribed for you?

                    November 25, 2013 view post
                    • aus6321 has replied to a post on the message board

                      Does you sister have back problems?  I've heard of back/spine/nerver problems causing pains like that.

                      November 10, 2013 view post
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