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MDyogi's Recent CancerCompass Activity

  • MDyogi has replied to a post on the message board

    ah.  If only it were easy!  We're at a huge center - Johns Hopkins, that's one of the leading research hospitals for head and neck cancers.  There are one or two about as big, but they're across country from us.  I was hoping maybe someone, somewhere had some different experiences.  

    December 13 at 3:01 PM view post
    • MDyogi has replied to a post on the message board

      JPaul, has anyone given you any advice for the nerve pain?  My husband is 6 years out from HPV stage IV tonsil cancer.  The nerve pain didn't start till about 3 years out, but has gotten so bad that some days he can't get off the couch.  It's running up and down his head and neck and into his shoulder.  Doctors have said it is/isn't from radiation, that it does/doesn't have treatment, that it will...

      November 27 at 12:43 PM view post
      • MDyogi has replied to a post on the message board

        Late to this thread.... my husband had HPV Stage 4 cancer in his tonsils.  I'm still not HPV positive.  But the long-term effects have been so very difficult.  Swallowing seems to get better after dilations (we've done two, so far this year, and they seem to be working) but the nerve pain up the side of his head and down his arms is pretty devastating.  Does anyone else get that, and has anyone fo...

        November 27 at 12:34 PM view post
        • MDyogi has replied to a post on the message board

          My husband's having a dilation for the first time in two weeks.  What should we expect?  Do they hurt and are they dangerous at all?  I'm rather confident about his doctor being good at this but it does seem like a great unknown. 

          August 01, 2018 view post
          • MDyogi has replied to a post on the message board

            Diana, what is VitalStim?  No one has mentioned that to us in the five years we have been chasing these demons. 

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

              Diana, yes indeed. The Gabapentin does seem to help a little.  Has anyone found anything else that helps at all with the tingling? 

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

                Diana, thanks for that information.  My husband's cancer was in both tonsils, but more in the left so that's where most of the radiation was focused - and that's where the tingling is--he says it's like ants running up and down his head and neck, under his skin, which I just can't imagine how bad that must feel.  It seems to be getting worse - we can power through the muscle cramps and they myokymia he deve...

                July 11, 2018 view post
                • MDyogi has replied to a post on the message board

                  thank you for this.  I'm desperate to try to find something that will help my husband be more comfortable.  I'm going to read up on ALA.

                  July 11, 2018 view post
                  • MDyogi has replied to a post on the message board

                    Has anyone tried medical marijuana for some of the swallowing issues?  My husband is 5 years out and is really starting to get bad swallowing, numbness in his arm, and tingling running up and down his head issues.  MM seems to help tremendously with the swallowing - within seconds his voice is good and his muscles relax.  Nothing seems to help the numbness and tingling.  Our radiologist says its n...

                    July 11, 2018 view post
                    • MDyogi has replied to a post on the message board

                      you bet I will.  It will take some time before we can figure out if it's helping or not, but I'll update.

                      January 18, 2017 view post
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