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emifriend's Recent CancerCompass Activity

  • emifriend has replied to a post on the message board

    Thank you Susan and HisPrincessToo: I have a replacement tube now and it is better ( but not perfect) So, I will remain interested in the topic, but not anxious about it. Thanks for your thougts! Best wishes, Emily

    February 27, 2017 view post
    • emifriend has replied to a post on the message board

      Thanks Bugsy! This is really good news! My GI doc did not mention this so I will research it and ask him. Appreciate your response! Emily

      February 21, 2017 view post
      • emifriend has created a new message board discussion

        Hello, I am wondering if anybody can give me practical advice regarding dealing with a leaky Peg tube. My medical team had no solutions beyond barrier creams and changing the bandage/drains a lot. Just wondering if somebody out here has figured out some good ways to deal with it. Thanks, Emily 5.5 year survivor tongue cancer

        February 21, 2017 view discussion
        • emifriend has replied to a post on the message board

          Opps--I just read the date on the original post. December! Hope the issue was improved for your dad. As for the masks, in Nashville- we donated them to artists who created things (art) out of them, that were then auctioned to raise money for HNC patients.  The evening was called Courage UnMasked--and the initiative was started in another city before  Nashville. Here's a link if anybody is interested: ...

          February 19, 2017 view post
          • emifriend has replied to a post on the message board

            I agree with all the above posts..  *** I took a Xanax before my treatments, ***I brought in an old cd that I had not heard in a while-- something I loved and knew every word too still ( Tapastry, Sweet Baby James, and Court and Spark - Dating myself here, I know) *** and before every treatment, I made the techies tell me how many of people they had treated that week and that they had not hurt anybody ...

            February 19, 2017 view post
            • emifriend has created a new message board discussion

              Hello Everybody: I have not been here in a long time--I've been doing great! 5.5 years past treatment with NED after stage 4  squameaous cell tongue/ floor of mouth cancer. I am surprised, at this point, to have a new (non radiation) issue. Last spring I accidently pulled out my peg tube and went to ER for a replacement. It was fine for 8 months, but  then started leaking and...

              February 19, 2017 view discussion
              • emifriend has replied to a post on the message board

                Cavman: How are you doing with those implants now that a few months have passed. I am very interested in hearing how this works out for you and hoping to hear good news! Thanks, Emifriend

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                • emifriend has replied to a post on the message board

                  Hello JimMac: We are glad you found this group and hope that you find help and encouragement here. This stuff is not easy!  I was diagnosed in 2010 and had surgery, chemo and radiation. I still have burning on my tongue in one particular spot. My surgeon told me it was because a nerve was close to the top of my tongue and was radiated. Something like that.   All toothpaste and mouthwashes burn my mouth. &...

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                  • emifriend has replied to a post on the message board

                    Hi Evonne: Two tips that might help. For the mucus buildup I took Robitessun DM ( with no other taglines) in my peg tube. It seemed to help!(ask your MD before you ad any meds to your regime) Instead of crushing my meds, I  dissolve them. in water.  I put them in a small syringe and then take in warm water, let them dissolve, and then inject them into my tube.  Then I fill syringe with one more rou...

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                    • emifriend has replied to a post on the message board

                      You have asked a good question about eating anxiety! I believe we are all dealing with so many subtle and big side effects, the emotioinal side of all of this can go undetected while we are trying to manage all the other issues. I have experienced eating anxiety and social anxiety from my new eating issues. It is so difficult to eat in social situations. I have found that conversations just blow past me. By the time...

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