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shong's Recent CancerCompass Activity

  • shong has replied to a post on the message board

    Treatments seem to affect everyone differently, so I'll share my experience for reference.   I'm 46 and have SCC in my left tonsil.   The first doctor I saw recommended 35 radiation and 3 cisplatin treatments.    After reading about the side effects of both, I went for a second opinion.   Because my cancer was HPV positive, I was able to get only 30 radiation treatments and no chemo.   W...

    December 30, 2015 view post
    • shong has replied to a post on the message board

      I went to a cancer center that offered proton therapy, but I was told that proton therapy wasn't an option for me because my SCC tonsil cancer spread to a lymph node in my neck.  As a result of the spread to my neck, a large area of my neck needed to be treated for potential spread to more nodes.   I was informed that proton therapy isn't a good option for treating large areas like this.  I was informe...

      December 30, 2015 view post
      • shong has replied to a post on the message board

        My mouth got bad around the same point--about the 15th treatment.   I had sores on the roof of my mouth, in my cheeks, and on my tongue.   I was using the magic mouthwash, which helped, but not enough.   My magic mouthwash also has an anti-fungal component, which may have prevented me from getting thrush.   Based on the suggestion of another, I requested a perscription of Gelclair.   The Gelc...

        December 17, 2015 view post
        • shong has replied to a post on the message board

          I'm 46 with HPV positive cancer in the left palatine tonsil.   I had the tonsil removed to confirm the source of the cancer, but I avoided the neck disection.   My decision was based on the fact that I would get radiation with or without the neck disection. As you may have read, HPV positive cancer has a good prognosis.    Because my cancer was HPV positive, I was able to participate in a study w...

          December 07, 2015 view post
          • shong has replied to a post on the message board

            I first went to the local hospital where my cancer was diagnosed.    The hospital wanted to treat me with 35 radiation treatments (70 Gy) and chemo.   They wanted to treat both the left and the right sides, which didn't sit well with me since my cancer was found only on the left side.  After doing some research, I went for a second opinion at the Siteman Cancer Center, which is part of Barnes Jewi...

            December 06, 2015 view post
            • shong has replied to a post on the message board

              Marc, Finished my 30th treatment yesterday (6 treatments a week for 5 weeks).   I was able to drive myself for all of them, which surprised me because I was expecting much worse.    I was My throat is sore and my neck is red and irritated, but I don't feel too bad otherwise.   I lost the hair on my neck and a little on my face.   I'm hoping for a speedy recovery, but I'm not going to set my ...

              December 05, 2015 view post
              • shong has replied to a post on the message board

                Marc, Congratulations on getting into the 25 treatment group!     After 19 treatments, yesterday, the hair on my neck started to fall out.   Today the hair on the left side of my neck below my mandible is almost all gone.   Oh well, I hope it will grow back some day.     My neck started to tan after about 8 or 9 treatments, now it looks red like I stayed out in the sun too long.  ...

                November 22, 2015 view post
                • shong has replied to a post on the message board

                  Susan, That's great you are five years out!  I hope to be where you are some day.   I agree that your oncologist was ahead of his time.    Do you know the total dose of radiation you received over your 25 treatments?    

                  November 18, 2015 view post
                  • shong has replied to a post on the message board

                    Marc, The pain I'm experiencing right now is not as bad as the pain I experienced after surgery.   The pain is a little different, but originates from approximately the same location. Do the two groups (25 or 30 treatments) receive the same total dose of radiation, or is the dose different between the groups?

                    November 18, 2015 view post
                    • shong has replied to a post on the message board

                      Marc, I had my tonsil removed before radiation, but only to discover if the tonsil was the primary tumor.     I'm in a trial as well to de-intensify treatment of HPV-16 positive cancer.    The study is NRG-HN002.   I was assigned to a group that will receive 30 treatments over a 5 week time frame (6 per week) to a maximum of 60 Gy without chemo.    The other group in the study rec...

                      November 17, 2015 view post
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