23 Months Post NED

Fritz Member Posts: 106

Hello all.  Been some time since I posted to the site.  I hope all are doing well and those in current treatment are receiving the advice they desparately need.  I know this site helped me during my time in treatment.

I had a 23 month post treatment ENT appointment today for Stage IVA Tonsil cancer (T2N2aM0).  Cancer had spread into nearby node, tongue base and soft palate.  Surgery to remove tumor, neck dissection with removal of 24 nodes plus 33 Rads (7 target zones) plus 7 Cisplatin treatments.  Today's results after scopes were a welcomed NED!!  ENT felt no need for any scans.  Dealing with typical long-term side effects that many post here (dry mouth, fibrosis, weakened thyroid, challenges with swallowing, etc.) but things could be worse.  You just have to accept that things will never be the same as they were before.

As always I hope the best for everyone who must venture onto this site.




  • Dean54
    Dean54 Member Posts: 157 Member
    That's awesome

    I can only hope I can say the same thing down the road and my cancer was almost identical to yours. I didn't have surgery (yet) but my treatment was almost the same and agree with the side effects you have.Just had a MRI and hope it will be good news but haven't heard anything yet.

    One thing I have now has me somewhat concerned, sore back of my tongue. makes me so paranoid. Throat doesn't feel right either but never really has since the radiation.

  • Fritz
    Fritz Member Posts: 106
    sore tongue

    Yeah, my tongue is always sore (both from the chunk removed as well as targeted radiation).  My neck/throat always feels tight (fibrosis from radiation) and sore.  Again, all long lasting side effects from the gifts that keep on giving.  I do hope your test results come back well for you.



  • Dean54
    Dean54 Member Posts: 157 Member
    Thanks Freddie

    The tests turned out ok so I'm thrilled for now and I think the soreness in the back of my throat is I'm coming down with a cold. Always something but for we have all went thru, that should be minor.

  • wbcgaruss
    wbcgaruss Member Posts: 1,964 Member
    edited June 2018 #5
    WoW Great

    Almost 2 years and getting NED.

    NED is good to hear anytime.

    Sounds like you are doing well handling the side affects.

    I also have most of the after affects of what you are dealing with except my thyroid is pretty stable.

    You went through some difficult operations and treatment so I am glad things are going reasonable for you.

    As for swallowing you may want to try some dilations I had 4 and they helped open my throat a bit.

    I still have to make sure I chew really well and add liquids as necessary to keep the flow going so to speak.

    God Bless and continued good health.