When does the swallowing get better?

catfish_58
catfish_58 Member Posts: 138 Member
in Head and Neck Cancer #1

Hello there,

     Have finished radiation and chemo treatments around about 5 weeks ago and have lost saliva or just thick saliva at times was diagnoised with SCC stage lll /left tonsil and part of right tonsil/had tumor on left side of neck with a lympnode involed,was HPV positive,had left tonsil biopsy and found the cancer area.Went through 33 radiation treatments daily and 7 Cisplatin Chemo's.Have peg tube and am using it for feeding can now drink a full cup of coffee and water during the day say around about 16 onces mainly use the tube.Tried to eat oatmeal,pudding,eggs,anything soft but seems to be hard to swallow seems like my throat is rough and hard to swallow.Is anyone had or was having the same problem,plus does the saliva come back cause I'm ready for fresh fried Catfish.Thanks to all.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Actually....

    you sound to me like you're doing pretty darn good.  Getting those 16 oz's down everyday is GREAT!  There is no sudden date after all you've been through, that swallowing goes back to normal....it happens s-l-o-w-l-y, by degrees....measured in weeks and months.  Keep trying the pudding, eggs, etc every week....you're going to eventually get a surprise!

    The saliva also returns very slowly (slower than the swallowing)....I'm almost a year out of radiation, and 9 months out from the end of treatment, and have about 40%.....ah, but I can eat most things as long as I've got my trusty water bottle at my side.

    p

  • cureitall66
    cureitall66 Member Posts: 913
    #3
    Doing well.....

    Sounds like you are doing well. You're farther along than some. As the weeks and months go on and you keep using those "muscles for swallowing", you will find you'll be doing more and more different foods.

    Keep it up!

    ~C

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #4
    Agreed

    Hi Catfish,

    You and I are almost on the same timeline. I'm 6 weeks out today. I was Dx'd Tx N2b MO Stage IV HPV-16 +.  I had 30 Rads 6 chemos. I'm using a PEG for about 80% of my nutrition. I started solid foods over the Memorial Day weekend. It's not the easiest thing to do and there are a lot of foods I can't eat yet, I'm getting at least one meal a day in by mouth. They have to be softer foods for now. I'm taking most of my hydration by mouth. For reasons unknown I'm very fortunate to have retained my taste buds through treatment. Some things are a little "off" (coffee for instance) but otherwise I'm fine. Saliva is an issue. I'm beginning to get a little bit back in the mornings for an hour or so but then the wel dries up. 

    Sounds like you're actually doing well. It's a slow process for sure! No putting a time frame of recovery unfortunately. 

    Positive thoughts and prayers

    "T" 

  • Roar
    Roar Member Posts: 269 Member
    #5
    My experience

    I finished treatment 12/10 it was my goal to have Christmas dinner at my house. Tat night I cooked a beautiful prime roast that everyone enjoyed. I ate onsal skinny slice that night and was miserable.here I am 5 months post treatment and I still can't eat a lot of things. But to answer your question, I was able to start eating solid foods of moist consistency about 8 - 10 weeks after treatment. Looking back I see that I definitely set my goals to high for recovery. This recovery thing is a very slow process measured in months not days or weeks. Have patience and keep testing yourself, pushing yourself to eat and drink different things. Try to get a lot of protein as that helps the healing. I started off with omelettes and cheese and now add in a little ham. I still have problems with solid meats and anything dry. good luck

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
    swallow big time

    catfish_58,

    You can drink fried catfish now (it sounds like).  Just make a smoothie out of it.  It would be full of protein to aid in the healing process.

    You sound pretty good, it just takes time to belly up to the normal eating table.  You will get there.

    Most food felt so terrible I decided to drink smoothies and just have food as taste and feel experiments, it worked for me and I was a happy camper.  Do what you gotta do, have fun, try things and don’t get bummed out.

    Matt

    PS I now eat anything I want (taste that’s another strory) and I always drank lots of water (skiffin’s rules).

  • klortie
    klortie Member Posts: 13
    #7
    Catfish it sounds like you're

    Catfish it sounds like you're doing great to be still swallowing at this stage. I was diagnosed with stage IV SCC and also

    went through 7 cisplatin/taxol chemos and 35 rads. I lost the ability to swallow about 2/3 of the way through treatment. After treatment the doctors said it sometimes takes a month or so. After 2 months of not being able to even swallow my own saliva, they said it sometimes takes up to 4 months. That turned in to 6 months. Then had modified barium which showed nothing could get down. 3 attempts at esophageal dilation failed completely and the doctors then told me I had to face the fact that I'd never swallow again!

    Being stubborn I refused to believe and went to Boston. 2 1/2 years and 5 different hospitals later (including Dana Farber, Mass General, etc.) I was told my esophagus was a dead piece of meat and there was no hope. I would be 100% PEG dependent for the rest of my life. Then one doctor referred me to the Cleveland Clinic where there was a doctor thee whom might be able to help. After 9 trips to Cleveland in 11 months, major experimental microvascular free flap surgery, I have regained the ability to eat and drink after over 3 years without swallowing so much as a drop of water.

    So there is always hope and if you're still swallowing now, chances are you'll recover quite well and within the generally accepted timeframe. Just be patient and keep swallowing no matter how uncomfortable it may be.

    Good luck!

  • donfoo
    donfoo Member Posts: 1,771 Member
    #8
    klortie said:

    Catfish it sounds like you're

    Catfish it sounds like you're doing great to be still swallowing at this stage. I was diagnosed with stage IV SCC and also

    went through 7 cisplatin/taxol chemos and 35 rads. I lost the ability to swallow about 2/3 of the way through treatment. After treatment the doctors said it sometimes takes a month or so. After 2 months of not being able to even swallow my own saliva, they said it sometimes takes up to 4 months. That turned in to 6 months. Then had modified barium which showed nothing could get down. 3 attempts at esophageal dilation failed completely and the doctors then told me I had to face the fact that I'd never swallow again!

    Being stubborn I refused to believe and went to Boston. 2 1/2 years and 5 different hospitals later (including Dana Farber, Mass General, etc.) I was told my esophagus was a dead piece of meat and there was no hope. I would be 100% PEG dependent for the rest of my life. Then one doctor referred me to the Cleveland Clinic where there was a doctor thee whom might be able to help. After 9 trips to Cleveland in 11 months, major experimental microvascular free flap surgery, I have regained the ability to eat and drink after over 3 years without swallowing so much as a drop of water.

    So there is always hope and if you're still swallowing now, chances are you'll recover quite well and within the generally accepted timeframe. Just be patient and keep swallowing no matter how uncomfortable it may be.

    Good luck!

    LOVELY STORY!

    I love this story as it embodies the strength the human mind and body to stay in the FIGHT. Rather than give up and resign oneself to PEG for life, you chose to contunie to fight and look for alternatives and find one you did. Bravo!

    PEG is a hopt topic and your are an living example and proof that with a bit more fight up front one may be able to avoid getting a PEG in the first place. Not for every case but in my heart there are a number of borderline cases where pushing a bit harder and fighting a bit more might very well indicate a PEG is not essential and could have better outcomes than getting a PEG then suffering serious side effects. don

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