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JohnnyK's Recent CancerCompass Activity

  • JohnnyK has created a new message board discussion

    I had 30 rads for stage 4 HPV+ tongue cancer that I finished on Nov 21/14. Since then, I experience on regular occasions these awful tastes in my mouth. At first, it was a lot of salty mouth but now its more like old cheese taste. It didn't matter whether I was eating or not. The other thing is that although I am back on solids, I have no appetite and food tastes lousy. Has anyone experienced this and what can be don...

    January 06, 2015 view discussion
    • JohnnyK has replied to a post on the message board

      Thanks JPaul, You have gone through a lot and it's great that you have this positive outlook. It helps as you say to have the support of a strong spouse. You can be a good example for me as I'm only a month out of my final radiation treatment. I'm down 35 pounds but in my case, it was good as I was at least 35 pounds over-weight. Thanks for taking the time to send me a message. Johnny

      December 20, 2014 view post
      • JohnnyK has replied to a post on the message board

        For the first time since this ordeal began (Aug 20/14), I can say that this week was better than last week. I feel this week I have finally turned a corner towards recovery. I’m going to try and keep my expectations in check but I was very glad for this week. I ate my first small meal in more than 8 weeks. I'm still taking the mouthwash & morphine 4X a day. One of the side-effects I'm experiencing is a very...

        December 20, 2014 view post
        • JohnnyK has replied to a post on the message board

          I'm glad that you intend to ask more. People often don't know how to help but if you can be specific (cleaning, driving, food, etc.), then that will help them to know what you need. I think this is something you would do for someone you cared about and this gives them an opportunity to provide tangible help and support. In the last few months as I've gone through my cancer experience, I am amazed at how some people r...

          December 16, 2014 view post
          • JohnnyK has replied to a post on the message board

            Being a caregiver for a spouse is difficult enough but to do it for a parent when you are still in high school must be very overwhelming. Are there no others that can be part of the support team, i.e. siblings, parents, adult friends, local church, etc? I would also recommend checking to see if there are support groups for caregivers in your area. I agree that you need your positive distractions, school studies, frie...

            December 14, 2014 view post
            • JohnnyK has replied to a post on the message board

              Hello PopPop, It was good to hear from you. I will try your suggestions about foods at room temperature and measuring progress week by week versus daily.  Thanks.

              December 13, 2014 view post
              • JohnnyK has created a new message board discussion

                I am a 57 year old male who was diagnosed Aug 20/14 with stage 4 HPV+ tongue cancer. I had a neck dissection and 30 doses of radiation. My last radiation was Nov 21stbut still feeling a lot of side-effects. I did not have a feeding tube but have been on a milk-based diet (2500 calories a day) because when I try food (soup even) I get a lot of mouth pain...my tongue starts to feel like its blistering and...

                December 12, 2014 view discussion
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                About JohnnyK

                Patient
                Head and Neck Cancer
                After Treatment

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