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LauriG's Recent CancerCompass Activity

  • LauriG has replied to a post on the message board

    Hi annsale, A little post-script.... I was concerned about the possibility that my symptoms were a paraneoplastic neuropathy. The neurologist and oncologist both told me "you get that with lung cancer and breast cancer but not neuroendocrine cancer". Six months later a PET scan report noted a hot spot in my breast and it turned out I had breast cancer (unrelated to NET). Since having a double mastectomy mi...

    June 24 at 10:04 AM view post
    • LauriG has replied to a post on the message board

      I haven't been on for a while, but I would encourage all of you to keep pursuing the diagnosis. I have Carcinoid Syndrome - currently off treatment because my body could not tolerate Octreotide injections anymore - but was being treated successfully for 9 years. My tumours have never been found even though I have had Ga68 Dotatate PET scans at twelve and six month intervals since 2010. Also, my tumour markers have...

      June 24 at 9:54 AM view post
      • LauriG has replied to a post on the message board

        Hi Annsale, I am not sure how similar my symptoms may be to your husbands', but this year I developed nerve pain and exhaustion out of the blue. I had almost constant tingling in my hands, and every couple of weeks I would have several days where it felt like my leg was on fire, and it would be a little weak. Many scans and consults with a neurologist, my endorcrinologist and oncologist, and they could not deter...

        December 11, 2017 view post
        • LauriG has replied to a post on the message board

          Hi Sophie, I have not been on in a long time so just saw your post. Any update on where things are at now?

          November 01, 2017 view post
          • LauriG has replied to a post on the message board

            Hi Djdante, just wondering if you had an update on your situation? What part of Australia are you living in? And are you seeing a specialist who has knowledge of NETs? The Unicorn Foundation did have a list of Australian specialists if you want to look them up online. They can also tell you if there is a support group in your area, which can be a good source of pre-diagnosis information. I was diagnosed in 2010 due ...

            December 30, 2016 view post
            • LauriG has replied to a post on the message board

              Hi Aquaholical, you are right to not accept a "ruling out" of carcinoid from one scan. I got diagnosed with Carcinoid Syndrome in 2010 (due to syndrome symptoms and my blood serotonin tests sometimes coming back elevated). CgA was only high once and I was on PPI at the time. Octreoscan 2010 negative. Sandostatin helped control the symptoms which confirmed the diagnosis. Have been having Ga68 Dotatate PET scans (much ...

              December 30, 2016 view post
              • LauriG has replied to a post on the message board

                Hi Rose, if your husband had a pituitary tumour and symptoms of carcinoid, it may be a good idea for him to be checked for MEN1. If he had MEN1 I don't know if he would get to the age he is without further tumours being found, but I would still ask the question. There is a genetic test available for MEN1.

                September 17, 2016 view post
                • LauriG has replied to a post on the message board

                  Hi there, I was 35 years old when diagnosed and have very severe syndrome - have to keep increasing my Sandostatin treatment to manage symptoms. However, my tumours are still too small to show up on any scans. I am about the turn 41 years old. My mother got diagnosed 2 years after me (they stumbled across hers when she was having surgery for an ulcer). She does have one that shows up on scans that they have not been...

                  November 08, 2015 view post
                  • LauriG has replied to a post on the message board

                    Hi Kate, I am on 40mg Sandostatin (Octreotide) every 3 weeks (was initially started on 20mg every 4 weeks but has to keep being increased to stay effective). I am not sure if your insurance company would limit dosages or frequency, but we follow the pattern of my symptoms - first increasing frequency to 3 weeks, then when that no longer worked increased the dose. My next option is Lanreotide (Somatuline Autogel). Th...

                    November 08, 2015 view post
                    • LauriG has replied to a post on the message board

                      Hi Daisy, I haven't been on lately so just saw your post. Has your son had a colonoscopy? I am making an assumption here, but I would have thought that if he is passing blood, something would be visible on either colonoscopy or capsule endoscopy (when you swallow a camera so they can see into the small intestine - a common place for carcinoid). Blood serotonin was the only marker for me that was elevated. Wi...

                      August 28, 2015 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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