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kaychan's Recent CancerCompass Activity

  • kaychan has replied to a post on the message board

    NET stands for Neuroendocrine Tumor. You may be interested in joining both Dr. Liu's Zebras and Loveable Lungnoids on facebook.  A ton of good info there.

    November 21, 2017 view post
    • kaychan has replied to a post on the message board

      Hate to be the bearer of bad news, but most doctors have never heard of this and the few Pulomonolist that have heard of it, don't know anything about it.  So far there is nothing to be done.  Some people have had some relief from coughing etc from somatastatin drug.  I tried them, but they did not help and the side issues were not something I was willing to deal with.  Some people do will, howeve...

      August 03, 2017 view post
      • kaychan has replied to a post on the message board

        On Sep 13, 2016 12:40 AMbarkerabwrote: I was diagnosed with DIPNECH in 2011.  I haven't found much help anywhere as this disease goes.  Pretty much the same scenario as to patients being diagnosed but nothing much as far as treatment. There are actually several of us that have connected on this list. Contact me and I'll get more info to you. Please put DIPNECH in the subject Kay

        September 18, 2016 view post
        • kaychan has replied to a post on the message board

          Today, 2-23-2016, I sent out the latest roster.  We have more than one missing email. If and when those people who asked to be on the list and have not given info, does,  will update and send again. k

          February 23, 2016 view post
          • kaychan has replied to a post on the message board

            Maria Rivera.  I am Kay Huff (also Kaychan).  I've told Ceil, already.   I am helping with the new roster. If you want to be on the list I need you to send an email address to me and/or Ceil.   Mine is:  kayphuff@gmail.com As soon as I get your email, I will send you the most current list.  If you can also add any additional info, it would be helpful.   Age, address, phone, sm...

            February 09, 2016 view post
            • kaychan has replied to a post on the message board

              Thank you

              January 24, 2016 view post
              • kaychan has replied to a post on the message board

                Is it Dr. Laurie Carr?  I think I found her, but see no reference to DIPNECH.

                January 24, 2016 view post
                • kaychan has replied to a post on the message board

                  I have also heard it may take a few shots to see results. I had sando a couple years ago and did very well on them for a couple months, then the side effects became too much for me. Some people do the shots for many years w/o problems, which is wonderful, because it does seem to be "the drug" that does the most for Neuroendocrine anything.  There is a newer one now and I've heard mixed results, but mostly go...

                  January 09, 2016 view post
                  • kaychan has replied to a post on the message board

                    LIVE is the operative word. ;)   .   Having the right doctors (which are not easy to find) are the key to living the best life we can.  Some of us have to travel great distance to see them, but well worth it. k

                    January 09, 2016 view post
                    • kaychan has replied to a post on the message board

                      Since you go to Denver anyway, you may want to consider seeing the world renown Dr. Eric Liu/Neuroendocrine Specialist.  He is just a few blocks from the Jewish Hospital.  He is my life saver.    k

                      January 09, 2016 view post
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