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paularae's Recent CancerCompass Activity

  • paularae has replied to a post on the message board

    I am a six year survivor of nasopharygeal carcinoma. I had 3 cisplatin chemos three weeks apart and then 39 radiation treatment. I would get chemo on the Monday of each week of radiation. I had to have the peg tub, but was able to get it out a few months after treatment. I suffer from severe dry mouth. This is my worst side effect. I also have TMJ problems. I continue to have dental checkups and dental work. I am to ...

    January 07 at 2:15 AM view post
    • paularae has replied to a post on the message board

      I started losing my hair after m6 second chemo. I decided that I did not want to have it come out in clumps in the drain. I has my head shaved. Go to the Look Good Feel Good from the American cancer society. They will give you some money for a wig. I would use a small cotton cap under the wig. Also, get a cap when you sleep. Your head gets cold with no hair. The good thing is that it comes back. I liked when I did no...

      November 18 at 10:05 PM view post
      • paularae has replied to a post on the message board

        I use the netti-pot saline nasal rinse. I can be purchased at any drug store. Get the mucus where it starts. Paula

        July 16 at 1:26 PM view post
        • paularae has replied to a post on the message board

          I am a five year survivor of NPC. I had severe migrains and swollen lymph nodes on both side of my neck before I was diagnosed. I did not smoke and was told it was due to me having the mono virus, which I don't recall ever having. I hope and pray you do not have this. Please leave an update when you find out. Paula

          April 04 at 4:53 AM view post
          • paularae has replied to a post on the message board

            I am a five year survivor of NPC. I did have the swelling under my chin. It actually was red and warm to the touch. I beleive the radiation was still working on me. I would use ice on it for ten minutes at a time. I did the massaging also. It did finally go down. I just deal every day with dry mouth has made me have to get a lot of dental work done.

            March 26 at 3:55 AM view post
            • paularae has replied to a post on the message board

              Kevin, I am five years NED. I have used a rice filled tube that can be heated in a microwave and put that around my neck to calm the muscles. I then do some stretching exercises. I do a self massage and then put heat on it again. If swelling occurs you can do ice for ten minutes and then heat for twenty minutes. This has helped me quite a bit. I do not have much saliva so I eat moist soft foods. I find toasting brea...

              March 18 at 11:24 PM view post
              • paularae has replied to a post on the message board

                I had the swelling and I used ice and heat to help. It is the radiation side effect. It does go away with time. Paula

                February 19 at 12:30 AM view post
                • paularae has replied to a post on the message board

                  I lost my hearing soon after my treatment. I went to my ENT who suggested that I get tubes put in my ears. I was amazed that it worked. Paula

                  February 12 at 4:08 PM view post
                  • paularae has commented on a news story

                    I unsdertastand that breast cancer is very serious, but as a head and neck cancer survivor I see that breast cancer patients get reconstructive surgery paid for by insurance. We get nothing. As my teeth begin to decline from dry mouth. My jaw is that of an eighty year old. The skin on my face is bumpy and wrinkled and I get nothing paid for to make me fell beautiful again.

                    February 05, 2015 view news story
                    • paularae has replied to a post on the message board

                      I have had jaw pain and l was not able to open very wide. I did go to an oral maxiofacial doctor and he said my jaw joint looks like that of an 80 year old. Since I have had radiation, surgery is not an option. I have had the therabite and it did not work. I then had braces to improve my bite. I have done the exrcises to keep the trismus at bay. I cannot eat anything hard or that need a lot of chewing. I have dry mou...

                      January 22, 2015 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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