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LauriG's Recent CancerCompass Activity

  • LauriG has replied to a post on the message board

    Hi Kathy, Also just seeing this message for the first time. Where are things up to with you now? It is such a horrible and confusing time when you don't know for sure what is causing what is happening to you. Of course it is going to make you emotional, which might also make your symptoms worse. There is a wonderful support group in Sydney called the Unicorn Foundation. I would recommend that you look them up beca...

    June 06 at 9:40 AM view post
    • LauriG has replied to a post on the message board

      Sorry Kathy, I have not been on in a while so only just saw your message. That post was from several years ago and Tassie is where the labs in Queensland used to send them. Now I think they do most of the carcinoid tests locally. Sorry I did not see your post sooner to clear up that confusion. A lot changes in the medical field in a couple of years! Kind Regards, Lauri.

      June 06 at 9:32 AM view post
      • LauriG has replied to a post on the message board

        Hi Karen, I haven't been on in a while and am just catching up. I read your post. Since I was last on here they still have not found my tumours. What I will tell you is that the only thing that has made these past 5 years bearable for me is being on Sandostatin injections. I have had to have some dosage increases over the 5 years, but when the levels are right I can be almost symptom-free (as long as I don't have alc...

        June 06 at 9:26 AM view post
        • LauriG has replied to a post on the message board

          Hi Aireny, Is the doctor putting you back on the Sandostatin injections? That is all that I can suggest. Even after all this time, and multiple Ga68 Dotatate PET scans, my tumours are still hiding. Injections of Sando are my only treatment option at the moment. If I were you I would be asking to be put on long-acting Sandostatin, and having short acting rescue shots for in between as needed. The only other thing I c...

          June 06 at 9:07 AM view post
          • LauriG has replied to a post on the message board

            Hi - haven't been on for ages and just saw your post Hanginginthere. There are carcinoid specialists who would disagree with the decision not to operate - they have found that, unlike other cancers, removing some if the tumours, even if it is not possible to get it all, will greatly improve symptoms and life expectancy. If you would like more info let me know and I can direct you to an online presentation ...

            January 23 at 1:24 PM view post
            • LauriG has replied to a post on the message board

              Hi Tanya, Have not been on for a very long time so only just read your posts. I got diagnosed with syndrome in 2010, but they have not been able to locate my primary despite me having had 6 Gal 68 Dotatate PET scans in that time (meant to be the best at finding them). However in 2012 my Mum was having surgery to remove an ulcer from her small intestine and while in there the doctors discovered by chance that sh...

              January 23 at 12:56 PM view post
              • LauriG has replied to a post on the message board

                Hi, just wanted to check if you had anyone reply to your post? I am in Australia and am aware of people having successful pregnancies, but don't know if I would have useful info to offer in particular....

                March 23, 2014 view post
                • LauriG has replied to a post on the message board

                  Hi Stourm, One thing I would encourage you with is that NETS are usually slow growing, and can take time to diagnose, so slow and steady is ok - getting the right info and gathering that info over time. I was fortunate because for me it was a year from distressing symptoms (acute abdo pain in particular) until I got diagnosed at 36yrs old. Although I had been flushing since I was 18yrs old. My tumours have not been...

                  October 14, 2013 view post
                  • LauriG has replied to a post on the message board

                    Hi Caren, I have Carcinoid Syndrome but they have not been able to find my tumours yet - diagnosed 2010. But.... in 2012 my Mum had an ulcer removed from her small intestine and they found 9 carcinoid tumours while they were in there, all smaller than 8mm. They were contained within the bowel wall, so only showed up because of the endoscope shining through during the surgery, otherwise they would not have been found...

                    October 14, 2013 view post
                    • LauriG has replied to a post on the message board

                      Hi Jennifer, I haven't been on in a while, have we connected? My Mum and I both have carcinoid. Lauri from Australia

                      August 29, 2013 view post
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                      About LauriG

                      Patient
                      Other Cancer
                      Biotherapy

                      I have Carcinoid Syndrome but no tumours located. I am being successfully treated with Sandostatin LAR. I am very thankful to God for the many miracles that resulted in my diagnosis.

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