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Still NED?????
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Still NED?????

› Forums › General Melanoma Community › Still NED?????

  • Post
    • March 14, 2021 at 7:52 am
    tedtell1
    Participant
      Hey melanomies;

      I am kind of worried right now. After being NED for almost three years in the last week I have developed discomfort and swelling in the base of my neck and constriction in my throat. I can’t feel obvious lumps or bumps, just see the swelling and feel the pressure that runs all the way up the sides of my neck. Also feel like a have a minor sunburn on my neck. Onco ordered an MRI of my throat and neck, and I had it on Friday afternoon. Will hear results tomorrow. Any thoughts? Yesterday I was so weak and tired I had to go to bed at 6PM as my body felt like a wet noodle. Has anyone experienced anything like this? FYI, I am not currently on any steroids (they caused similar issues when I was on a heavy does for colitis). I will update when I know more tomorrow. Thanks,

      Ted

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    • Replies
        • March 14, 2021 at 9:44 am
        Bubbles
        Participant
          Sorry for the worry, Ted. Hopefully, you will get good results at your visit tomorrow.  Given your description of how you are feeling, I would certainly make sure they do a complete thyroid panel and consider thyroid related issues like hypothyroid and/or thyroiditis.  Hang in there and rest today!  Yours, c
          • March 14, 2021 at 3:47 pm
          MelMel
          Participant
            I understand how worrisome this may be however, there may be many different reasons for the base of your throat to feel constricted and swollen besides the one we are conditioned to think of first.

            Personally, I had experienced constriction as well. My internist who did an endoscopy mentioned this and although he tried to ease it mechanically, he informed me that although this would work, it is only temporary and eventualy it would return. Depending on my diet, I may feel like I actually have a lump at the base of my neck and I find it difficult to swallow. If I eat more plant/fiber based foods and avoid eating less than three hours prior to bed I seem to avoid this awful feeling. When I take supplements I must remove them from the plastic casing because they just sit at the base of my throat and I feel like they are actually suffocating me. I am experimenting with a bit of intermittent fasting and it seems to help as well.

            The following site may be useful in order to see other possible causes for your particular issue.

            https://www.webmd.com/a-to-z-guides/tightness-in-throat-causes-treatments

            Best regards,

            Melanie

            • March 15, 2021 at 12:37 pm
            sing123
            Participant
              Hi Ted, I hope you get great news. I recently had an aching feeling in my lymph nodes and got an all clear from my scan. With Spring approaching (don’t know where you are) might it be a reaction to pollen? Please keep us posted.

              Best,

              Cindy

              • March 15, 2021 at 5:32 pm
              tedtell1
              Participant
                Hey everybody;

                MRI was negative….yay, but ended up going to the ER to get checked. Everything normal….except a new 8MM nodule in my lung. We all know that means nothing!

                Thanks for the good vibes everybody. Exhausted and a little depressed about the”ghost” condition that remains undiagnosed. Almost like I am imagining it or something.

                Ted

                • March 15, 2021 at 7:06 pm
                Bubbles
                Participant
                  Glad that your MRI was negative, Ted!!!  Hopefully your tiredness and throat issues will be dealt with and/or disappear as magically as they arrived!  (I would still make sure that a T4 and TSH were checked just as a precaution!)  Take care!  c
                    • March 17, 2021 at 6:53 am
                    tedtell1
                    Participant
                      Soooo,

                      Was sent to an ENT yesterday to get my throat/nose all that checked as a precaution. The wonderful PA who saw me had looked at my charts from visits for the last month and asked me if I had any follow ups scheduled. I told her no, and she asked me if they had told me what was going on with my lungs. I mentioned the small node seen in my lung. She had the report with her and she showed me that the radiologist in the ER had also commented that I seemed to have some possible inflammation/thickening in the wall of my lung. (she and I were mystified why the ER didn’t mention this at all to me or recommend follow up), so long story short, off to the CT scan this morning to get a precautionary done on my chest to see what’s what. Could well be nothing. Not super worried, just wondering. Unfortunately, still feel like crap though.

                      Thanks for all the support. Will post after I get results.

                      Ted

                      Oh Celeste, the PA said that if there was something going on with my thyroid they would have seen it in the MRI. Do you concur with that? Curious???

                       

                      • March 17, 2021 at 12:24 pm
                      Bubbles
                      Participant
                        It is very good news that nothing related to your thyroid is showing up on the MRI.  However, not being visibly troublesome doesn’t mean that the thyroid is functioning properly.  We know that hypothyroidism can make one feel very tired.  We also know that the thyroid can be impacted by immunotherapy – often pretty early on in treatment – but…  Its function is easily checked with a simple blood draw.  So….just being cautious given your history and description of current symptoms.  I hope the CT is fine.  A viral process can make you feel crappy and inflame your lungs.  Life is never simple, is it????? c
                      • March 16, 2021 at 10:28 am
                      sing123
                      Participant
                        So glad to hear your good news! Am

                        sure it was emotionally stressful. But the best outcome!

                        • March 16, 2021 at 8:40 pm
                        Mark_DC
                        Participant
                          Hi Ted – missed your original email – am glad that everything was fine, no need to worry – you give hope to us all!

                          I am two years NED (I think, don’t want to jinx it), scans every four months, stressed each time, any odd bumps (like when i twisted my ankle or crashed my bike) make me worried also headaches and things. We all suffer from this. Glad the oncologist took you seriously, put you through the MRI, and happy about the great news!

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