Three weeks post Chemoradiation and struggling to drink a sip of water let alone anything else

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Hi there, I am new to this forum. I have been treated with 30 sessions of radiotherapy, mixed with chemo (2 sessions) for HPV+ related throat and tongue sarcoma. I coped reasonably well with the treatment, it was fairly grim and I was fitted with a PEG which I am still using full time. I am over run with phlegm, which is never ending, albeit my wife assures me is dying down, there seems to be nothing i can do to reduce it all day and night, which is fairly frustrating and debilitating.

I am now trying to wean myself of the PEG, and wanted to start this by firstly swallowing water and then migrating to soups, cut up food etc. The problem is, every time I try and swallow water, I gag and am sick and it is not improving in any way; it’s really painful and feels alien. I want to be rid of the PEG as soon as I can but if I can’t even swallow a capful of water, there seems little hope. Has anyone had a similar experience?

I am trying to work out how to swallow and get that working, so that I can move onto foods. I seem to have dramatically underestimated this stage. My positivity has got me this far but I am wobbling a little now.

Fingers crossed, similar experiences might help me work out what to do…

  • Hi   

    well done in getting through so far. You are indeed overestimating the speed of recovery. 3 weeks is really early. The radiation residual effects are only just subsiding. 
    I was managing very soft foods at six weeks but really couldn’t have done it any earlier. Have you been doing your swallow and jaw exercises throughout? 
    The mucous is inevitable but it does get better. I managed to shift some of it by steaming my head over hot water but others found a nebuliser more useful. You can try something fizzy too. Diet ginger ale or soda water  

    There is a drug called carbocysteine which some doctors prescribe. It thins the mucous. 
    Keep trying. That’s all you can do. 
    Your dieticians won’t take that peg out till your weight is stable without using it so just take slowly and you’ll get there. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Good evening MWCG, do you have a dietician and speech therapist who should be able to guide you, if you are not seeing either the dietician or speech therapist then maybe your consultant can sort it out for you. They might want to do a swallow test to see if there are any problems. You are still in the early stages of recovery so keep up with the positive attitude as i strongly believe it helped me get through it all, i know what its like when you cannot swallow, also the phlegm, mucus, etc does not help with the swallowing, you will get there it just takes time. Good luck with your continued recovery, take care.

                                                                                     Chris

    Its sometimes not easy but its worth it ! 

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  • Hi As  Dani says you may not think it  but it’s early days for you in recovery. Have you been doing swallowing and jaw exercises in still do them now at 6 years post radio . I had the mucus for approx  3 months I used a nebuliser up to 6  times a day I resorted to,pulling the mucus out with my fingers yes it’s revolting but needs must. My ng tube was my lifesaver , I maintained swallow to a degree throughout treatment but yes I too was unable ti sip water for a period of time Take it slowly and it’s a marathon not a sprint. Boig below might help. I had carbusistine to help thin the mucus , also with soda water to help disperse it by swilling it round my out and trying to gargle. 
    Soluble aspirin helps if you gargle with it as well.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • My husband had exactly the same problem and saw a speech and language therapist. She observed him swallow and encouraged him to swallow twice in quick succession after a sip of water and that stopped him coughing. She also recommends that yohurt is easier to practice with than water as it’s thicker. 

  • swallow twice in quick succession

    I'd forgotten that. It's what I worked out on my own and did it naturally. Sometimes even three swallows were needed.

    Something thicker than water is the trick if you are aspirating. 

    How is your husband now  ?

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi  thanks for your message. Just finished week 7 post treatment. He is gradually  building  some of his strength back and he walked nearly 5 km this week but still has several naps during the day. Pain is still quite bad although his oncologist advised him to come off morphine so only taking codeine and paracetamol now. He is still anxious that his neck lump is still present and clearly visible. We see his team on Wednesday for a review and pet scan sometime in July. X

  • Sorry to hear this - but like others have said. Totally normal - it takes a long time to be able to swallow. I couldn’t even swallow my own saliva. I used boxes of tissues and was spitting out all the time - horrible! 
    it will get better but it takes a while. 

    Keep your chin up - it will get better. 
    Rachel x 

  • I was still tube feeding using my PEG at your stage.  I still have my PEG in now as it was agreed it would not be removed until after a clear post treatment scan (which I got last week).  I was using it for bulk hydration for around 2 1/2 months until I could swallow easily.  I can still really only take single sips, but continual drinking is slowly coming back. I am now easily eating solid foods abet soft ones.

    It is a long game, this recovery.  Best you contact your SALT (speech and language) for advice and a check up if you are worried - even if just for professional reassurance this is normal!  I have seen mine every 3 - 4 weeks during recovery.

    Peter
    See my profile for more details of my convoluted journey
  • He is still anxious that his neck lump is still present and clearly visible.

    Some of these take weeks to disappear so don’t worry. 
    well done Mr Worrylo. He’ll get there. Xxx

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you for your advice. My take out is whilst it’s still early days and I shouldn’t be too ambitious, just yet. Also solids, like ready break etc might be an easier start than water in the swallowing stakes. I will try the double swallow too, but right now I am more likely to gag and be sick, so I’m almost better off not rushing it.

    I have tried carbocysteine through the peg, only to be told by the very helpful pharmacist, you have to swallow it! Will keep trying until it becomes easier. Am now worried re PEG as like others, oncologist won’t remove until after the first scan. Naturally, I suppose, my mind wanders to, what if this hasn’t worked…I keep pushing it away but inevitable I think…

    I have family holidays booked in two months and was so hoping to be able to eat and drink but fear this might not be the case…it’s my goal right now, so let’s see. I need that PEG gone but if I cannot swallow water or eat food now, there seems little hope.

    I really appreciate you support, advice and experiences, it helps me shape my goals a little more realistically.