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NJM01's Recent CancerCompass Activity

  • NJM01 has created a new message board discussion

    Hi all, With the caveat that I am an absolute novice when it comes to Facebook, I just wanted to let you all know that I have started a page called “HPV HNC Support” in an attempt to engage HPV HNC patients, survivors and carers in discussion and the exchange of ideas and information. The idea is not to replace invaluable sites such as this, but rather to provide a different medium and connect with people who may ...

    4 hours ago view discussion
    • NJM01 has replied to a post on the message board

      Praying2018 - if your partner is facing HPV throat cancer then you have every reason to be optimistic. I had stage IVA HPV oropharyngeal cancer with bilateral lymph node involvement. The survival and cure rates for HPV throat cancers are high, particularly relative to non-HPV cancers. Depending on what study you look at, the 5 year survival rates are upwards of 85%. Today marks 6 months since I finished the hell t...

      March 13 at 4:23 AM view post
      • NJM01 has created a new message board discussion

        There is some useful and often positive/reassuring information in this article: https://link.springer.com/article/10.1007/s00508-017-1171-5 I’m just about to go for the first review with my oncologist since a clear PET scan in January following a complete response to chemoradiation for T3N2cM0 HPV tonsil cancer. In the lead up to the review, my mind has been playing tricks on me in terms of how my throat feels ...

        March 09 at 10:26 AM view discussion
        • NJM01 has replied to a post on the message board

          I’m about 6 months out from chemoradiation. The first few months were very hard for me - it took 3 months before I made any real progress on eating but persistence is key. At the moment, my taste is about 70% or thereabouts of what it was and my salivary function is about 50%. All in all, I’m not complaining and from what I gather, things are likely to continue to improve. Take it one week at a time and slowly but su...

          March 08 at 12:58 AM view post
          • NJM01 has replied to a post on the message board

            Hi Erin, I also had tonsil cancer and whilst I did not have to undergo surgery, I did endure 7 weeks of concurrent chemotherapy and radiation. Even though your husband's situation is no doubt going to be different for many reasons (including the fact of his surgery and the fact that everyone responds differently to treatment), I hope you find the following suggestions helpful... please note that although you asked ...

            February 10 at 1:58 AM view post
            • NJM01 has replied to a post on the message board

              Hi Younpa, I'm sorry to hear about your diagnosis - learning that you have cancer is not easy to deal with.  To put my response into context, I wanted to share with you that I was diagnosed with stage 4 tonsil cancer about 6 months ago. My tumour was 6cm in length and the cancer had spread to my lymph nodes bilaterally. Like you, chemo radiation was the only option for me and I too felt like my time had come. ...

              February 03 at 9:51 PM view post
              • NJM01 has replied to a post on the message board

                I'm also a little over 4 months out from concurrent chemo and radiation. The treatment was the hardest thing I've ever done - it took me to depths of suffering I didn't think I would ever have been able to handle. However, I've just received a clear scan and I'm rebuilding my life slowly. I'm not the same as I was but I'm getting a little better with each passing week and life now has some semblance of normalcy again...

                January 28 at 11:38 PM view post
                • NJM01 has replied to a post on the message board

                  Thanks Susan - an interesting article and promising avenue of research. I do hope future treatments can be more targeted and impact less on the quality of life for H&N cancer survivors.

                  January 13 at 2:44 AM view post
                  • NJM01 has replied to a post on the message board

                    It took me a good 3 months after treatment to eat again. Honestly, I think in retrospect that it was a psychological issue - after not eating for some 4 months in total, it was hard to put food in my mouth and trust the swallowing process. The only way I could resume eating was to tape up my feeding tube and tell myself that I had no choice but to eat... I started with porridge and moist, soft foods and took it slowl...

                    January 12 at 10:05 AM view post
                    • NJM01 has replied to a post on the message board

                      Hi Susan - the link doesn't seem to work (for me). Would you be kind enough to re-post it please?

                      January 12 at 9:58 AM view post
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