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Katsen57's Recent CancerCompass Activity

  • Katsen57 has replied to a post on the message board

    Perhaps you are under too much stress? I have never heard about anyone loosing hair from Sandostatin. I am on 60mg and have not experienced this issue. Seek a support group. it will be more helpful than you think! Good luck!

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    • Katsen57 has replied to a post on the message board

      Hello, There is a great hospital that treats carcinoid/NETS patients in Sweden. Many American patients go there if they can afford it. The Gallium 68 is a great scan you can do also a Chromogranin A test is helpful, or pancreostatin test is helpful too. Good luck?

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      • Katsen57 has replied to a post on the message board

        Me again. I meant to say the Octreotide scan takes about 20-30 Min. each time. The contrast will be given to you on the first day, you go home, the next day, about the same time as the first you get the scan, you go home and the 3rd day, the same time as the other days, you get another scan. Then your done. Inform youself and seek help from the Dr.s that are highly informed with this disease. Most Dr.s have barely he...

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        • Katsen57 has replied to a post on the message board

          Dear Stourm, Having Heart palpitations is also a symptom of Carcinoid so it may not be "all in your head". Don't let anyone dismiss you. If you are not getting the answers you are looking for Move on the another Dr. You are your best advocate. You are the only one who knows what you are going through. If it is Carcinoid Syndrome one sure way to get yourself to flush is to drink red wine. Some people have even mentio...

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          • Katsen57 has created a new message board discussion

            Hi folks, Please be aware of an upcoming Conference held in Edison, New Jersey on Saturday, November 2, 2013. for patients, caregivers, family members and Medical Professionals. For more information please check out the New Jersey Carcinoid Cancer NETwork .org website. It's all one word. I have to write it like that so the powers that be don't remove it. Apparently you can't put a website or e-mail address...

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            • Katsen57 has replied to a post on the message board

              Dear Chris12, I am a carcinoid patient diagnosed in '07 with for-gut primary and metastesis to the liver. If your Grandmother can't afford the Sandostatin perhaps she can get her Oncologist write a letter of "Medical Neccessity" to Novartis Pharmaceuticals (Creator of Sandostatin). They may be able to provide at least 30 Milligrams of Sandostatin to her. It is often done and they do respond. Apparently this med is st...

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              • Katsen57 has replied to a post on the message board

                Dear Chris12, I am a carcinoid patient diagnosed in '07 with for-gut primary and metastesis to the liver. If your Grandmother can't afford the Sandostatin perhaps she can get her Oncologist write a letter of "Medical Neccessity" to Novartis Pharmaceuticals (Creator of Sandostatin). They may be able to provide at least 30 Milligrams of Sandostatin to her. It is often done and they do respond. Apparently this med is st...

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                • Katsen57 has replied to a post on the message board

                  NHBobGuy, Most people complain of flushing right after they eat or while drinking red wine. I guess it might not make your face turn red all the time but why wait to ask your doctor. Call the Dr. It is a quick simple question and won't take up that much of yours or his/her time either. I suffered from flushing for like 5 yrs. before I was DX'd but since i am lactose intolerant I was associating the flushing...

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                  • Katsen57 has replied to a post on the message board

                    Dear Brenda, Sandostatin was originally made to treat Agromiglia (not sure if spelled right), a disease where people have enlarged limbs, but found that it can be used for suppression of Carcinoid symptoms. The big "D", flushing, & heart palpitations to name a few and it can keep you from going into what is called Carcinoid Crisis. If you are undergoing a procedure such as surgery (I always ask for...

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                    • Katsen57 has replied to a post on the message board

                      Dear lindat, I also have heard of this happening. But it is no small price to pay. You can ask your Dr. if Lanreotide might be better for you. This is the new somatistatin that Novartis is making to replace Sando. I don't know too many people on Lanreotide but it might be a possibility. Good luck! Katsen

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                      About Katsen57

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                      Colon Cancer

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