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dlind48's Recent CancerCompass Activity

  • dlind48 has replied to a post on the message board

    I hope your experience is different from mine. I was having some digestive issues and a CT showed a mass next to my mesenteric artery which sounded the alarm for carcinoid.  All of my subsequent scans were negative for carcinoid (including 2 octreoscans), and my labs came back normal or only slightly elevated. I had an exploratory laparotomy to remove the mass, but turned out to be benign. What was discovered wa...

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    • dlind48 has replied to a post on the message board

      I am not dealing with any new or significant stressors at this time, so I think that explanation is off the table. I did do some research, and while not a common occurence, hair loss is listed as a possible side effect. When I mentioned it to my local doctor, as well as to my doctor at the Mayo Clinic, they both agreed it could be an issue and decided to put me back on the 20 mg. dose to see it that helps. Thanks for...

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      • dlind48 has created a new message board discussion

        Has anyone experienced hair loss while on Sandostatin LAR? I was at 20 mg. for about a year and a half and had some slight shedding. We upped me to 30 mg. in January due to an increase in my syndrome symptoms, and almost immediately, my hair loss significantly increased. I normally have a lot of thick hair, so even a moderate loss would not necessarily be noticeable, but now, i have only about half the amount of hair...

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        • dlind48 has replied to a post on the message board

          Has an exploratory laparotomy been considered? That was the only way we discovered the extent of my disease, since nothing was showing up on my scans or lab work. Maybe they feel it would be overkill for you at this point. I don't know if it's the shots or the indoent nature of the disease or maybe a combination of both, but over the past year, my disease has stayed essentially unchanged. I'd like to think it's the ...

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          • dlind48 has replied to a post on the message board

            OOPS...tumors showing NO measurable growth!

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            • dlind48 has replied to a post on the message board

              I just had my 6 month visit at Mayo in Scottsdale, as well as an oncology surgigal consult. My tumors are essentially unchanged, showing measurable growth on my scan. All my labs were good, except that my pancreastatin was slightly elevated. I had it done here in Tucson 3 months ago, and it was 85, but the results a couple of weeks ago at the Mayo Clinic were 125. The Tucson lab's normal range is up tp 135, however t...

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              • dlind48 has replied to a post on the message board

                Laparoscopic surgery may not be possible. My exploratory surgery was a full laparotomy, when we discovered carcinoid in my small intestine, mesentery, and liver, none of which had shown up on any scans. It's major surgery with a considerably long recovery time to completely resume normal activities, although I was driving within a week to 10 days after being discharged from the hospital and traveled 200 miles to Phoe...

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                • dlind48 has replied to a post on the message board

                  I did have a PET scan (not with Gallium) that showed nothing. My blood work was coming in only marginally elevated until we ran the pancreastatin test. I was mistaken when I said my initial level was 177 - it was 207 in Oct. In Dec. it went down to 177, and my most recent test 3 weeks ago showed it is down to 85, which is in the normal range. This seems to indicate that the Sandostatin shots are doing their job and m...

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                  • dlind48 has replied to a post on the message board

                    I understand your frustration. My tumors only showed up when they did surgery for what we thought was a carcinoid next to my mesentery artery, but it turned out to be only a fatty tumor. I went in thinking they would remove the culprit and I would be good to go. Instead, I got the news that I have inoperable metastatic carcinoid. I never had the syndrome and none of my labs or scans were showing anything, in spite of...

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                    • dlind48 has replied to a post on the message board

                      I'm sorry to hear you are so badly affected by this disease. When I went to Mayo in Scottsdale in October, they did blood work which included a test for pancreastatin, a test that I had never had done before. The upper limit of normal is 88, and mine came back at 207, which was the first time any lab work had shown anything significant. After getting 3 Sandostatin shots, I went for a return visit in December, an...

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