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john19382's Recent CancerCompass Activity

  • john19382 has replied to a post on the message board

    So sorry to hear that the cancer has returned.  It is something that many of us think about and unfortunately too many of us experience it.  It probably makes sense to consider different options  -meaning geting a couple of opinions.    If you let this group know the area where you live, there is a good chance someone will have knowledge about the health care options.  Persona...

    October 05, 2018 view post
    • john19382 has replied to a post on the message board

      5 years out last month, I had 30 proton radiation treatments after a couple of surgeries.   First surgery was a partial neck disection - in which the mass was removed.    The secound suregy was robotic - to remove any cancer from the source (tonsil).    Early part of recovery was plauged by dry mouth to the extent where I carried a water bottle - everywhere.  &n...

      August 09, 2018 view post
      • john19382 has replied to a post on the message board

        I totally understand Diana. It is the small things that we need to celebrate.... whether it is being able to eat / taste a favorite food again or being able to speak without my tongue being too dry. I am five years out this month.... the first few years I needed to have a bottle of water with me almost 100% of the time. Glad to say my salivary glands have made significant improvement and sugarless gum really...

        July 24, 2018 view post
        • john19382 has replied to a post on the message board

          Hi All, Yesterday I had a follow up appointment with my speech / swallow pathologist.    I last saw here about 2 1/2 years ago - and she walked me through a few mouth / swallow exercises which may help to some degree.  I would recommend that anyone recovering from throat / tonsil (head / neck) cancer have at least one consultation with a speech / swallow pathologist.  

          July 20, 2018 view post
          • john19382 has replied to a post on the message board

            Thanks Gerry, Your message helps put things in perspective and is spot on about the variation in side effects. My sister passes away 5 years ago this month after her breast cancer resurfaced in her brain. She told me something after my initial diagnosis about how it changes a person's perspective about what is important. At the time I was not in agreement with her but almost 5 years out I have to say I am...

            June 06, 2018 view post
            • john19382 has replied to a post on the message board

              thank you all for sharing and the support.   My last radiation treatement was July 8, 2013 so I am almost 5 years out.  When I was getting PT in 2013 my Physical Theapist commented that radiation is the gift that keeps on giving.   I had no clue what she meant, but am now starting to understand. Even with Proton Radiation there are lasting and late term side effects.   Wh...

              June 04, 2018 view post
              • john19382 has replied to a post on the message board

                Diana. Thank you for sharing, very good information. I finished treatment (30 sessions of proton radiation - post partial neck dissection) in July 2013, so soon to be 5 years out. I still have all my teeth but get cleanings every 3 months as my salivary glands were impacted. Glad to say my salivary glands are much better now....close to 80% of pretreatment (my guess). I also use a flouride gel - al...

                April 10, 2018 view post
                • john19382 has replied to a post on the message board

                  It has been awhile since I posted.    I really appreciate everyone sharing their experiences - even the ones that rasie a level of concern about the future.  I finished my proton radiation treatment on July 8, 2013  - so, soon to be 5 years out. I also have had multiple surgeries prior to the radition treatments - 1) partial neck disection to remove mass, 2) to remove what was the source of...

                  March 16, 2018 view post
                  • john19382 has replied to a post on the message board

                    Thanks AZLinda, good to hear that this may pass in time. The folks at work are getting accustomed to my pauses when the tongue wants to do its own thing.

                    February 02, 2018 view post
                    • john19382 has replied to a post on the message board

                      I am 4 1/2 years out - had tonsil cancer and a mass in my neck.   Treatment included a modified radical neck dissection, an additional robotic neck surgery to remove any cancer at ths source (tonsil) follow by 30 Proton radition treatments...I too get cramps in my neck at times which feel intense like a charley horse.    Fortunately they tend to pass quickly.   Also started get...

                      February 01, 2018 view post
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                      About john19382

                      Survivor
                      Throat Cancer, Tonsils Cancer, Head and Neck Cancer
                      After Treatment, Physical Therapy, Radiation, Side Effects

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