After Treatment

I am 8 weeks post treatment HPV stage 4 base of the tongue and 4 lymph nodes 3 left side neck 1 right side.  42 radiation treatments, 6 cisplatin over a 6 week period.  I did well with treatment losing 10 lbs and no severe burns.  As expected, I lost saliva glands and the hair from my beard and neck.  I also have the "lyphodema neck" and lack of appetite - I have lost an additional 20 lbs since treatment.  Taste is coming back and overall I still feel pretty good, but I am sleeping at least 12 hours a day.  I have started walking 15 minutes every day and doing modified yoga twice a week but that is about all I can do.  Opinions?

Comments

  • christine2080
    christine2080 Member Posts: 71
    Sounds like you’re doing

    Sounds like you’re doing pretty well (IMHO). My husband has a diagnosis similar to yours & went through 35 IMRT & 6 Cetuximab over 7 weeks. He is almost 10 weeks out. His energy level remains low although this week he did go on a short (10-15 minutes) walk with me. He lost his 40 pounds from week 3-8, but has stabilized and eats without much problem now. His taste is slowly returning, but has pretty bad dry mouth.

  • Peneloppe
    Peneloppe Member Posts: 28
    edited January 2018 #3
    You are doing great, wishing

    You are doing great, wishing you the best

  • dwp155
    dwp155 Member Posts: 30

    Sounds like you’re doing

    Sounds like you’re doing pretty well (IMHO). My husband has a diagnosis similar to yours & went through 35 IMRT & 6 Cetuximab over 7 weeks. He is almost 10 weeks out. His energy level remains low although this week he did go on a short (10-15 minutes) walk with me. He lost his 40 pounds from week 3-8, but has stabilized and eats without much problem now. His taste is slowly returning, but has pretty bad dry mouth.

    Thank You!

    Thank you for the reassurance!

  • dwp155
    dwp155 Member Posts: 30
    Peneloppe said:

    You are doing great, wishing

    You are doing great, wishing you the best

    :)

    Appreciate the feedback!

  • Curlyn
    Curlyn Member Posts: 189
    edited January 2018 #6
    I think you are doing great!

    I think you are doing great! 42 radiation treatments are no walk in the park. You might begin to feel a bit better sooner if you can get some calories in (since you mention thst you lost an additional 20 lb). If you sleep 12 hr, maybe have a high calorie drink by your bed, if you wake up. Are you able to make smoothies that you can add protein powder to? I think you are rocking it with the exercise.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    We should do as well as you..

    We should do as well as you.. vert good!!!!

  • tommyodavey
    tommyodavey Member Posts: 728 Member

    Like the rest, I too think your progress is fantastic. What I found odd with you and most of us here is the weight loss staying off well after treatment ended.  Normally, when a person doesn't eat their metabolism slows down and they gain weight.  With us, it seems we kept off a bit w/o working at it.  For years I was 180 with a 36" waist.  Since treatment ended in 2012 I'm stuck at 172 and a 34" waist.  Weird, but okay with me.  

    Time seems to be the only thing that makes us better.  Eat well, try to walk and keep busy and your body will heal in time.

    Congrats on a good recovery!

  • aak16
    aak16 Member Posts: 24
    Sounds good

    I think it sounds like you're doing great. If you're looking for suggestions, have you seen a lymphadema-certified physical therapist about your neck? Mine just ordered a neck/head wrap for me and the salesman said that a lot of people feel a lot better in the mornings when they sleep with it on.

  • dwp155
    dwp155 Member Posts: 30
    edited February 2018 #10
    aak16 said:

    Sounds good

    I think it sounds like you're doing great. If you're looking for suggestions, have you seen a lymphadema-certified physical therapist about your neck? Mine just ordered a neck/head wrap for me and the salesman said that a lot of people feel a lot better in the mornings when they sleep with it on.

    Thanks!

    I did get an appointment!  I'll let you know!