Massive tongue swelling just when all was feeling better

Hi all, I finished tomotherapy for my late stage 3 tongue cancer on 11/11/2011, and my last erbitux infusion 11/30/2011. I missed out on thanksgiving of course, but had started eating small portions of solid food just before Christmas. I was determined to have some Chinese food Christmas eve, and I was actually able to have a little. Just when I thought I was on the road to recovery, I caught a small cold after Christmas. I noticed my tongue was a little swollen in the morning but figured it was due to dry mouth since it would dissipate throughout the day. However after new years, the cold had seemed to run it's course, but my tongue ballooned to were I could not close my jaw without biting it. After a few days of continuing swallowing difficulty I returned to my CTC and Was admitted to the hospital for observation. I was on antibiotics for several days, but After a ct scan and MRI I was told the swelling was most likely necrotic tumor tissue, which meant it wasn't an infection. Since it didn't block my air way and I could still swallow somewhat, they sent me home. My tongue has been consistently swollen for almost a week now and it's still difficult to drink my protien shakes and I'm considering getting a feeding tube. I was wondering if anyone else had experienced the same spontaneous swelling and if it went away.


  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    a thought or two
    could this be lymphedema? Is the rest of your neck swollen? Have you been laying down more than usual as a result of being sick, or in the hospital? Just random thoughts....

    I had an episode of laryngeal swelling after my radical neck. I guess it was caused by lieing too flat for too long. Nothing else was affected, but it was pretty scary while it lasted. It resolved just by being up and around.

    If this is lymphedema it will need to be treated like other head and neck lymphedema which occurs after radical surgery.

    Sorry I cant' be of more help.

  • Pam M
    Pam M Member Posts: 2,196
    Is there nothing your docs recommended for the swelling? I don't know how necrotic tumor tissue acts - do they expect the swelling to subside on its own, or are they saying it's permanent? Would steroids or antiinflammatories not help? Are docs recommending a feeding tube? Sorry to hear you feel you may need one, but good to know you're ready for it if it's necessary.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Tongue swelling
    I did have tongue swelling on and off after treatment, although it was never as bad as you describe. It was harder to swallow, I had trouble speaking clearly, and I would bite my tongue, severely and often. It was a real pain, figuratively and literally. I figured it was due to edema. It would come and go, but when I got it, it would hang around for days. I now sleep with my head elevated, to minimize the tongue and neck edema that I still get. I bought one of those bed wedge pillows that they sell for folks with acid reflux.