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Randolph51's Recent CancerCompass Activity

  • Randolph51 has replied to a post on the message board

    The last time I posted here was about 4 years ago, so here is an update. I was on Dr Fine,s protocol of CapTem until June of this year. That would make it 5 1/2 years. Xeloda at 2500 mg 14 every 28 and Temodar at 460 mg. 5 every 28. My primary was in the small intestine and two large tumors in lymph nodes in the mesentary. The baseball and golf ball analogy still applied as they stayed stable, no shrinkage. The...

    November 06, 2015 view post
    • Randolph51 has replied to a post on the message board

      So you seem to have some of the same symptoms I have which doesn't mean that much. I am 63 yr old male with carcinoid syndrome. In my case a 24 hour urine test showed elvated levels of serotonin in my body, followed up by elevated levels of serotonin found in my blood, followed up by CT Scan showing tumors, and an octreotide scan also showing tumors. I am afraid you need tests and scans to be sure. Strangely eno...

      September 08, 2015 view post
      • Randolph51 has replied to a post on the message board

        Thanks much. I am a 64 year old male, diagnosed in 2008. Was on CapTem from 11/09-6/15. Then went for surgery and now trying to deal with the liver. The tumor burdem in the liver is apparently quiite small, the CapTem did wonders, so this liver procedure is sort of shooting for the moon for me. Again thanks for the feedback R

        September 06, 2015 view post
        • Randolph51 has created a new message board discussion

          Does anyone have any experience in these therapies for dealing with Carcinoid Syndrome tumors on the liver? I am getting mixed signals on the efficiency as it specifically relates to the desease. I had mid gut tumors removed surgically but the liver will have to be attacked otherwise. Anecdotally I understand the efficiency might relate to volume of tumor, size and ki67 stain measurements, but any information would...

          September 04, 2015 view discussion
          • Randolph51 has replied to a post on the message board

            I was part of Dr. fine's clinical study with CapTem. The cocktail of Xeloda and Temodar at low dosages. I had a tumor in my small intestine and two large tumors in my lymph nodes. Nothing in the bones but my liver was covered 30-40%. Started the program in 11/2009 and stayed on it until 6/2015. The liver tumors dropped to almost nothing perhpas 4 approaching the size of 1cm and the rest looked like pin prcks. The r...

            September 04, 2015 view post
            • Randolph51 has replied to a post on the message board

              Diagnosed with Carcinoid on 08 and have been on a trial with Xeloda and Temodar for about 2 years.  Multiple liver leasions more than half have been reduced in size from 1 cm to a pin points. Remaing mets have stabilized.  The liver is basically getting cleaned up, albeit slowly but positively.  There are some mesentary mets that after two years are showing some shrinkage.  No matter what you take...

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              About Randolph51

              Patient
              Other Cancer

              Diagnosed with Carcinoid Syndrome 10/08. Opted to do a trial prior to surgery. Started on Sandostatin, elevated to a trial in 9/09. I think the Octreotide Scan lit up like a Xmas tree. Tumors have been stable but surgery is definitely in my future. They are on liver, in bowel, and in bones.

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