Hello, I'm new to this group and I am looking for some advice on HPV16 tonsil cancer.

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My husband was diagnosed with HPV16 cancer in his left tonsil which had spread to his lymph node in the left side of the neck. 9 days ago he completed 30 rounds of radiotherapy and 6 sessions of chemo. Since the treatment stopped he has been suffering from terrible gagging/coughing and thick secretions inside his mouth that make him feel nauseas. He is struggling to talk and can only manage a few sips of water but I feel he's doing well. however, today he has become very depressed and says he feels like he will never speak again and that the lumps he can feel in the back of his throat will never go. I feel as if he's given up before he's even started to recover. The hospital are doing a telephone review this week, but he can't speak so now is convinced that there's an issue with him and that he's not going to get his voice back. His thinking is, why give him a telephone review if not talking was expected. Is losing your voice normal at this stage? What I can I do to encourage him to keep up with all the things he should be doing, as he's not doing his throat exercises either. I am so worried that he's given up. 

  • First, well done on getting through. 
    You have to remember that radiotherapy has a residual effect so things actually get worse for 2/3 weeks after treatment ends. So that means pain voice loss ulceration and phlegm all get worse. 
    What is your husband doing to help himself ?

    Hydration is key. 3 litres a day. I found steaming over hot water with a towel over my head helped enormously. Some folk use a nebuliser. Sipping soda water or diet ginger ale loosens a lot  sticky stuff 

    Don’t worry about exercises. A few weeks off doing those won’t hurt. 

    I am so worried that he's given up. 

    He hasn’t. He needs reassurance that everything he is feeling physically and emotionally is normal and things do get better. 
    Give him a hug from me. 

    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 I can onky  concur with Dani. I’m almost 6 years post radiotherapy for HPV  16 plus tonsil cancer .Hydration is the key I was on 2-3 litres if water mostly via my ng tube. Plus I was using my nebuliser up tom6 times a day. Treatments brutal and recovery can be long. The point if the phone call will be to see how he’s getting g on it’s too early to do a scope etc so hence the phone call. Try to get him to look at our blogs and he will see we all had issues after treatment started but there’s a great life to be had afterward ps. HPV driven cancer in head and neck has an excellent n5 year cure rate over 90% so that’s something to hold on to. Plus read this article. 
    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    his throat and swallow exercises like Daninsays a few weeks off won’t matter as long as he starts again when he’s up to it  Has he a peg or ng tube as he needs 2500-3000 calories as well has that’s a big aid to recovery  

    Hazel xx

    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  

    • Hi PennyD

    A warm welcome from me xSorry to hear about your husband but as Dani and Hazel have said hes exactly where the majority of us are after treatment ends .

    The build up of Radiotherapy (and the effects the chemo has had) really start to become apparent , I also couldn't talk so used text and a pen and paper to communicate ( my voice still has issues now Im 6mths post treatment).My Mum had to talk on my first telephone review,you can tell the team how hes doing.

    Mucus can be really troublesome for some people I found 7 pillows boxes of thick tissues and oral sponges helped a little ,some people find Carbocisteine useful to thin the mucus( you can ask his team for this).The nebuliser really worked well for  a few people I met  during my Hospital stays.  My CNS loaned me a suction machine which really helped.NowI only have a bit of mucus each morning it can take a while but it does get better( or go completely x).

    He's doing well to still sip water , but obviously its essential to keep his fluid intake up ( hopefully via his feeding/ng tube)if not he will become dehydrated very quickly.

    He hasnt given up …he's just physically emotionally and mentally exhausted (and highly likely also in pain).most of us have days where we feel like we cant carry on ,its normal to feel like that .

    Feeling lumps swelling in back of throat is also normal after its been blasted with high dose radiotherapy but just inform his team of all of his/your concerns when they phone.x

    Just reassure him that hes done amazing getting through such a tough treatment and that there will be light at the end of the tunnel .

    Debbie

     

  • Hey. I completely understand and have recently gone through same myself. 

    I’m 6 weeks post treatment (chemo and radiotherapy) for exactly the same thing (only on my right side).  

    I found radiotherapy ok, had two doses of chemo - second one was tough but came out of treatment thinking I was past the worst of it (despite the nurses trying to manage my expectations!). 

    the reality was that the two weeks post treatment were probably my toughest   - had exactly the symptoms you describe, thick secretions, coughing, up through the night having to clear them etc   Using a saline nebuliser four times a day really helped me (it seemed to loosen the secretions and make them easier to clear)  - but the key message is they did go away after a couple of weeks!

    I still have some issues I’m dealing with that I hoped would be gone by now (I’m super impatient!) - I have pretty bad tinnitus in my left ear (probably from chemo) and I might just need to deal with that long term  

    mouth and throat wise, it’s still tough  - I have dry mouth which is particularly bad overnight and I’m currently on day 12 of 50mg of Flucanzole to try and get my oral thrush under control    - it’s slow progress and sometimes it’s easy to lose sight of the fact you are improving because it is so slow  

    I still don’t have my ‘normal’ appetite back either - but the desire for food is slowly returning  - had BBQ ribs last night and a ham and cheese croissant this morning - that would have been unthinkable a couple of weeks ago  

    stay positive and strong and this forum is amazing x

  • Hi Penny

    I have gone through similar as have many on this site, He can do it but it is & will be tough.

    We all get to feel sorry for ourselves as everything seems to be unrelenting & as others have said things are very likely to get worse yet BUT he has you &, I am sure, others round him & people on this site that will all help him. He has more strength in him than either of you know so please stick with it &, as I know only to well, things do get better.

    Wishing you both all the best x

  • Hi  Penny 

    T2N1M0 tonsil cancer HPV16+ finished chemoradio June 2023

    I landed in hospital at the end of chemoradio... 12 days  ... rapid weight loss due to ulceration and pain impacting my ability to get nutrition in....got to a really low point where I could not be bothered with talking... Help from support teams and family pulled me out of the downward spiral.... not easy .....the importance of keeping the throat hydrated and active cannot be stressed enough ....even when discharged from hospital I felt really low.... fortnightly video calls from oncology teams certainly gave me strength.

    Take care and best of luck 

    Peter 

  • Everything has been said above. Get him to write down things that are troubling him.

    My husband took the calls for me. And related problems and answered questions. 

    No voice for 2 months.

    Stage 3 larynx cancer. Completed treatment 2022..

    Good luck it's a long haul 

  • Hello, thanks for all your responses. Great news to report. 5 weeks after ending treatment, husband had his tube removed yesterday and has been managing most foods. Tonight he has managed a curry!! What a huge difference 6 weeks makes!!!!!

  • Hi Penny fab news baby steps and he will get there. Thank you for great update really helps others. 

    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  

  • Well done Mr PennyD. The only way is up. 

    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