Thanks from a new member

FamilyLove Member Posts: 22 Member

I came across this site a few days ago researching problems with your teeth after radiation.  I wish I would have found it sooner.  I found out I had tonsillar squamous cell carcinoma stage 1V in Jan. if 2016.  I had a tumor at the base of my tongue and it had spread to one of my lymph nodes.  I had no signs other than my throat burned a llittle when I drank orange juice and I had a swollen lymph node under my right ear. (which had happened before from an infected tooth.) I had taken several rounds of antibiotics before going to the ENT.  

I had radiation two times a day and chemo once a week. After three chemo treatments I was so sick I had to be hospitalised for nine days.  I was taken of chemo because I was too weak.  During my hospital stay I had a g-tube put in.  By this time I could barely swallow water and had lost a lot of weight.  I was so tired it was all I could do to go to the treatments. My dad and my sister took me.  Several months after treatment I still could not swallow.  My throat was still raw so I thought it needed more time to heal. I was sent for a swallow test and they found I had a stricture.  I then went for an EGD.  The doctor said my throat had closed up nearly all the way.  I have had 16 egd's with dialation over the past year.  My throat opened enough to swallow after a several egd's and is now opened up to almost normal. I got my g-tube removed after one year post treatment. I have lost 50 lbs but finally I am maintaining a steady weight. I've even gained a few pounds.  My taste is still pretty bland and I have very dry mouth.  All my pet scans have come back NED.  I still get tired a lot but I am doing well.  I have accepted this new normal and am grateful to be here.

I want to thank all of you.  I have had so many questions and wanted to communicate with someone who knew what I was going through.  I have learned a lot reading your posts.  THANK YOU AGAIN and God Bless


  • CivilMatt
    CivilMatt Member Posts: 4,722 Member


    You (unfortunately) sound like the poster child for some of the side effects for H&N cancer.  We are sitting in your corner when it comes to discovery, feeling sick, weakness, trouble swallowing, g-tube, etc..

    But, you persevered and are climbing your way out.  It can be a slippery slope, but we are rooting for you, to make it.

    The H&N forum was very good for me.  I tuned in as treatments were being decided and took to heart the benefit of working the problems.  The best and easiest advice I got was to drink water and swallow often.  I really did not process very well what my team and this site said would happen.  I was going to be a lucky one and dodge all the bad, but I did not.  I was typical and rode out the first year with humbling realization that life is crazy and most of this trip we do alone.  I had tons of family and H&N support, but the cancer was mine and mine alone.

    We all know the difficult time you have had, but if you are like the average one of us, you will improve to a good life place.


  • SuzJ
    SuzJ Member Posts: 427 Member
    So very true Matt

    Remember I was upset because I wasn't Superwoman?


    I tell people now, that cancer is a HUGE learning curve, and you are the only one that can learn it.


    Without this forum and all you wonderful, wonderful people I'd have been really lost!