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lindatrue's Recent CancerCompass Activity

  • LindaTrue has replied to a post on the message board

    Thank you. I wish you a wonderful New Year, too. I signed up to go to a Carcinoid, NET Conference in San Francisco on Jan. 24. It's about 200 miles from home; hope it'll be worth it. Are you going?

    January 07, 2016 view post
    • LindaTrue is now friends with LauriG
      January 05, 2016
      • LindaTrue is now friends with Turtleshel
        January 03, 2016
        • LindaTrue is now friends with kleinforce
          January 02, 2016
          • LindaTrue has replied to a post on the message board

            I have had carcinoid syndrome for about 5 years now and have been having 30 mg. time release Sandostatin injections every month. I also inject myself with small amounts of instant acting Sandostatin when I feel symptoms returning (like flushing, stomach pain, diarrhea), or If I anticipate a stressful situation coming up, like going to the dentist or traveling. (I bring syringes and sandostatin vials along in a cooler...

            January 02, 2016 view post
            • LindaTrue has replied to a post on the message board

              Thanks for your comments. I self inject Sandostatin in the stomach toward the end of the month, when I feel like my time release isn't working as well as the beginning of the month. I might need to go on another type of octreotide.

              January 02, 2016 view post
              • LindaTrue is now friends with ivyday
                January 01, 2016
                • LindaTrue has replied to a post on the message board

                  I am 68 and was diagnosed with Carcinoid in 2011. I had just retired from teaching and was looking forward to being carefree and traveling, etc.  At the time, I was told I probably have had it for decades and that carcinoid can go undetected, with the person living with it and eventually dying of old age or something else. It is usually slow-growing, but Dr. Wolin told me that it could "mutate" into a faster gro...

                  January 01, 2016 view post
                  • LindaTrue has replied to a post on the message board

                    Yes. Since being diagnosed with Carcinoid Sydrome in 2011, I have noticed that I'm "allergic" to things that never bothered me before, like airborn allergens, such as dust, maybe pollens, cat hair, and especially smoke--We can't even use our woodburner any more because the smell makes me naseous. Also, I was feeling bloated after eating, so I decided to eliminate gluten, and don't feel as bloated any more. I also tak...

                    January 01, 2016 view post
                    • LindaTrue has created a new message board discussion

                      I have been having monthly shots of Octreotide 30 mg time release, but I'm very skinny and practically have no "butt." I think this injection site, along with my skininess, is affecting the nerves in that area. Is there anywhere else, like the thigh, where I could receive the injections?

                      January 01, 2016 view discussion
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                      About lindatrue

                      Patient

                      I am a retired teacher and grandmother of 7. I retired eager for travel, projects, gardening, and carefree fun. A year into retirement I was diagnosed with Carcinoid syndrome. It's a rare cancer and, so far, there is no cure for it. Even after 5 years, I do not know anyone with the same cancer, and I feel so alone. I live in a low population area, so there are no support groups. I hope to meet and share and learn from others on this website.

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