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paularae's Recent CancerCompass Activity

  • paularae has replied to a post on the message board

    If you want a natural way of controlling mucus. I have used the netti-pot with sodium and warm water. If you want more pressure behind it, you can get a squeeze bottle. Just do daily after a warm shower. Does wonders. I take salagen to stimulate saliva, but one of the side effects is that wonderful mucus. I think I get more of the mucus than saliva. Just my luck. Eh. I grew up in Northern Minnesota, we always say eh ...

    October 15 at 10:56 PM view post
    • paularae has replied to a post on the message board

      This is my fifth year, so welcome to the club. It is hard to grasp that I am now cured. Cheers to us all. Paula

      October 02 at 3:34 AM view post
      • paularae has replied to a post on the message board

        I wish I had been told of the option of tomotherapy. I just went with what the doctors were telling me. I suffer from a severe dry mouth. My only hope is a clinical trial for gene therapy and then it will only be one parotid gland. Better than nothing I guess. Life has changed. Talking, eating and doing physical activities are affected. I was only 47 when I was diagnosed with NPC. I deal with a soar throat every day....

        October 02 at 3:29 AM view post
        • paularae has replied to a post on the message board

          Jen, I see that you are in Pittsburgh. If you want a third opinion, my ENT doctor is Dr. David DeMarino. He has extensive experience. He will give you an honest diagnosis and what should be done. Try not to worry. You have no lymph node involvement. I hope you get your questions answered. Paula

          September 04 at 3:47 AM view post
          • paularae has replied to a post on the message board

            I have a friend that has throat cancer. He had robotic surgery twice and over 70 lymph nodes taken out. He feels that they got it all and does not want to do chemo or radiation. I am a five year survivor of NPC. I live with a constant dry mouth. But, I am alive. I have tried to tell him he needs this treatment. I will tell him what you said about know not having the lymph sytem to contain the cancer cells if it does ...

            September 04 at 3:31 AM view post
            • paularae has replied to a post on the message board

              Caroline, I am a five year survivor of nasophayngeal carcinoma. I had the three chemos and had horibble nausea. The amend was given for only three days. I would go back for hydration and antnausea meds between my chemo's. It really helped. I lost my hair after chemo 2. I shaved it off and when and bought a nice synthetic wig. You can get them with parts that look like natural. I would wear a cotten beeni under to ab...

              August 21 at 10:29 PM view post
              • 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
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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 five 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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