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Here2Love's Recent CancerCompass Activity

  • Here2Love has replied to a post on the message board

    I used organic coconut oil because it is a medium-chain triglyceride, which is the only type of fat that I digest since I have pancreatic insufficiency due to neuroendocrine tumor on my pancreas.  Since using it, my lipid profile actually improved, so it has definitely been helpful for that purpose.  I do not know about decreasing occurence of infection, but it is significant to note that I have not had any...

    March 27, 2014 view post
    • Here2Love has replied to a post on the message board

      I have needed a pureed diet for several years due to neuroendocrine pancreatic cancer.  My gastroenterologist gave me the the guideline that if the food could be squeezed through a tube of toothpaste, it was safe for me to eat.  This was because the tumor on the head of my pancreas presses on the digestive tract.  So I developed many recipes.  My blog of nutritious pureed recipes http://puree...

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      • Here2Love has replied to a post on the message board

        Here is another link to good information, though most of it is for Bad Berka, but it also provides links to other sites.   http://www.prrtinfo.org/

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        • Here2Love has replied to a post on the message board

          Jen,  I haven't been to Cancer Compass for a long time but was so glad to see you are posting again!   Hope all is well with you. The MN Support Group is known as Northwoods NETS:  Here is the link.   http://www.northwoodsnets.org/  Sending you an abundance of whatever you need most in your life today.  

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          • Here2Love has replied to a post on the message board

            I had distal pancreatectomy with splenectomy in 1998 to remove a 14cm neuroendocrine tumor (NET) on the tail of my pancreas.  The surgery was done at Mayo in Rochester MN. The surgeon, Dr. Nagorney, did a remarkable job.  I've had a long journey since then with recurrence, but obviously I am grateful to still be here and doing reasonably well. Sending you an abundance of whatever you need most in your life...

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            • Here2Love has replied to a post on the message board

              A great site to find information about Carcinoid is the Carcinoid Cancer Foundation at http://www.carcinoid.org/   There will you will find access to listserves that have many members with Carcinoid only in the lungs.   Hope this helps.  

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              • Here2Love has replied to a post on the message board

                I should have noted in my first reply that I have lived with pancreatic neuroendocrine (NET) tumor since 1998.   One of the best recommendations I can give you is to be sure to be seen by a physician who specializes in carcinoid/NETs.  There are now many such physicians/clinics.  The Carcinoid Cancer Foundation http://www.carcinoid.org/ has a list of specialists.  Look particularly at th...

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                • Here2Love has replied to a post on the message board

                  Two other very helpful resources that you might want to look at are: Carcinoid Cancer Foundation: http://www.carcinoid.org/ That site is dedicated to Carcinoid Cancer and has amazing resources, as well as a listserve to join. I am part of that listserve and it is very active every day and has been a great resource for sharing information with others.   Another helpful resource is the Caring For Carcino...

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                  • Here2Love has replied to a post on the message board

                    Congratulations on 21 years!!!  I'm not sure I understand if the sequence of events and diagnosis correctly in your situation.   Did you get the diagnosis of islet cell neuroendocrine in 1999 when the tumor was removed? Were there other tumors in 2005?  And what type of chemo did you have?  Most neuroendocrine tumors don't respond to chemo bc chemo is designed for fast growing cells and neuroendoc...

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                    • Here2Love has replied to a post on the message board

                      I have had to eat a pureed diet for the last 3 - 4 years due to a rare type of pancreatic neuroendocrine tumor.  I was initially repulsed by the idea of eating pureed foods, but then started to develop my own recipes that were delicious and that I could tolerate.  I refused to eat "baby food" that had no complex flavors. My gastroenterologist encouraged me to share my recipes with others, so I developed a b...

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