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paularae's Recent CancerCompass Activity

  • paularae has replied to a post on the message board

    I am a five year survivor of Nasopharyngeal carcinoma. I had three rounds of chemo three weeks apart and then I had 39 radiations with weekly chemo's. It was the hardest thing I have ever had to go through. If you hve not had radiation yet, I would suggest looking into proton beam radiation. It spares the surrounding tissue. I live with chronic dry mouth from having IMRP radiation. I am looking forward to a clinical ...

    July 11 at 12:34 AM view post
    • paularae has replied to a post on the message board

      Sorry to hear about you troubles. Due to your problems with food, maybe you should see a nutritionist who could help with what you can eat or if you need the peg tube, as I had, perhaps they know of a liquid that does not have protein in it. having this problem will make your fatigue worse. I think going to a church and finding someone who can drive you and care for your Son. Stay strong. I am a five year survivor of...

      July 11 at 12:09 AM view post
      • paularae has replied to a post on the message board

        I am five years clear of nasopharyngeal carcinoma. I have my taste back, my energy back, but not much saliva. I do have some numbness in my toes. Just eating moist soft foods and trying to do things with a dry mouth. Not like I used to be. Paula

        July 05 at 4:58 PM view post
        • paularae has replied to a post on the message board

          I have been trying the new biotene gel that replaced the bioten liquid which I liked and let me sleep through the night. This gel does not last and I wake up so dry.  I will give this a try. Paula

          July 05 at 4:36 PM view post
          • paularae has replied to a post on the message board

            Clear, clear, clear is what we love to hear. May you be blessed with all clear scans. Paula

            April 30 at 10:48 PM view post
            • paularae has replied to a post on the message board

              I am going to be getting the nutribullet mixer. It has the pro model that has 900 watts. I am hoping that it purees the nuts and the oatmeal. I like my shakes smooth. I want to start pureeing vegetables to use as sauces. I went to a restaurant that served chicken on top of pureed butternut squash. It was delicious and much more healthy than using gravy as my sauce. Thank you for the information. I am going to try for...

              February 06 at 12:50 AM view post
              • paularae has replied to a post on the message board

                I take salagen three times a day. I don't get enough saliva to drool unfortunaltly.  Still to dry to talk for long periods and still can only eat moist soft foods.  I too sweat at night when I take my evening pill.  I would not go without it.  I am going to go to a clinical trial for gene therapy late summer. Criteria is five years clear. If anyone want to try and be part of this, let me know...

                January 23 at 3:09 AM view post
                • paularae has replied to a post on the message board

                  Thank you all for your suggestions. Will be trying what has been mentioned.   Paula

                  January 16 at 12:07 AM view post
                  • paularae has replied to a post on the message board

                    I know my eating anxiety got better with time and experience.  I had to experiment with different foods. Always had a glass of milk at my side just in case.  I feel that I am eating healthier since I cannot eat chips and candy bars.  I have actually been able to eat bread with the crust off and use tuna or chicken salad.  To make it even more moist, add a slice of tomatoe. Susan, I like your smoo...

                    January 10 at 3:30 AM view post
                    • paularae has created a new message board discussion

                      For over four years I have used Biotene products for dry mouth. They first changed the mouth rinse and now have the spray on hold due to a labeling mistake.  They are know taking the oral balance liquid off the market.  If you look to buy it on line Amazon has it for $999.99 for a 1.5 ounce bottle.  I used this when I would go to bed. It helped me to stay moistuized durring the night.  I do not kn...

                      January 10 at 3:11 AM view discussion
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                      About paularae

                      Survivor
                      Head and Neck Cancer
                      Acupuncture, After Treatment, Alternative Treatments, Clinical Trials and Research, Recipes, Emotional Support, Lifestyle

                      I am a four year survivor of Nasophayngeal carcinoma stage 3. I still suffer from dry mouth and talking,eating and physical work cause me great discomfort. My jaw and jaw joint have been affected, so that opening my mouth causes pain. The skin on my chin and neck is burnt with scar tissue. I am looking for answers on alternative treatments for dry mouth, and or clinical trials.

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