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aus6321's Recent CancerCompass Activity

  • 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 at 4:03 PM 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 at 8:18 PM view post
                  • aus6321 has replied to a post on the message board

                    It sounds like the doctors did not finish the whipple in November of last year because they found the tumor had spread to the liver, right? In this situation, the doctors were probably thinking about risk vs. reward.  Even if the doctors had completed the whipple, the tumors in the liver probably would have continued to grow.  When you hear of patients getting chemo in order to become candidates for s...

                    November 10 at 8:16 PM view post
                    • aus6321 has replied to a post on the message board

                      1) It's good to read you are seeing an NET specialist.  This type of tumor grows differently than adenocarcinomas and does need to be treating differently. 2) I'm surprised your doctors were able to figure out you had an NET with an EUS - did they also grab a specimen for biopsy through FNA?  WIth my first FNA/biopsy, the pathologist either didn't have enough of a sample to properly diagnose the tumor or j...

                      September 24 at 8:16 AM view post
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