Excessive mucus three years on after RT

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I would dearly like some advice, please, on a couple of issues.  I had a fibula flap operation on April 7th 2021.  Although it was a complex operation and took 11 hours the histology was relatively positive.  The margins were clear, no cancer in the lymph glands and the tumour was downgraded to a 1.  I was offered four weeks of RT instead of six, and was in two minds whether to accept or not.  However, I did, and it was the worst decision of my life.  In the two weeks after my operation I was beginning to eat properly, and I could talk in my normal voice.  After the RT I can’t speak properly, or eat, and I have been diagnosed as aspirating my food, meaning the muscles in my throat have been affected.  One of the worst things is the excessive mucus, which can make me choke and vomit.  Does anyone have any solution for that?  After a PET scan, revealing a ‘hot spot’ in the roof of my mouth, my consultant thinks it’s a new cancer, but I have decided not to have any treatment for it.  I am 85 and I have not long lost my husband, so I feel there is no point ‘hanging around’.  I would, however like some advice on the mucus, as well as how to cope with what is to come.  Thank you very much.

  • Hi Goolden

    So sorry that you are in this predicament and about the loss of your husband. This is a tough time for you. Do you have family who could give you support at this time ? Radiotherapy can take its toll on us and the excessive mucus can be part of that. I know someone will be able to give you some advice on this from personal experience. Excessive mucus is not one of the things that I had an issue with but I have heard others say that using a humidifier at night has helped and also putting your head over a bowl of steaming water. Some have mentioned thinning the mucus by drinking fizzy water has helped but you would have to be careful with aspirating it.

    Talk to your oncologist about your future steps if you do not have anymore treatment. He should be able to talk you through how things will progress. I did this with my oncologist when I considered not going ahead with treatment at one stage and he was very up front about things. (I did proceed with the treatment in the end) You could also contact Macmillan to discuss with a nurse.

    Thinking of you and sending you big hugs.

    Lyn

    Sophie66

  • Thank you so much for your kind email.  I think I will give the humidifier a try, so thanks for the suggestion.  I have got wonderful family, but unfortunately they live a long way away - San Francisco(!), London an Brighton.  I live in Tenby, Pembrokeshire!  They do come down whenever they can, but they have work and family commitments.  I try not to be too demanding and I know that if there was a problem they’d be here at once to help.

    Im not a candidate for immunotherapy, apparently, or another operation.  The best I can be offered is ‘palliative radiotherapy’, which after my experience of RT sounds to me like a contradiction in terms.  I really don’t mind dying, but I don’t want to have a lot of pain.  At the moment I have no idea how the cancer might progress, but I shall talk to my surgeon about that when I see him in December.

    Thank you for your kind and helpful response.

    big hugs to you too  Jo (Goolden)

  • Hi Sorry to hear that your cancer may have returned. I did have a humidifier in my bedroom at night and also a nebuliser to help thin the mucus. You can ask for carbusistine which thins the mucus this is in prescription. It’s so sad with yiur husband dying last year ,please rea h out to your famiky I’m sure they will want tomhelp..

    hugs

    Hazel z. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Jo

    It is hard that your family live so far away. Would it be possible for you to visit them for a few days to help get the support you need? Family are such a blessing and mostly rise to the occasion and I'm sure that yours would as they sound lovely. In spite of their busy lives I'm sure that they would want you to reach out to them so they can give you support. They would not want you to be alone at this hard time.

    I know that mine would be upset if I did not open up my very legitimate worries with them. That is not being too demanding.

    Discuss with your surgeon your worry about the possible pain issue that might develop. He will be able to open this up more and give you advice.

    Thinking of you and sending you positive thoughts

    Lyn

    x

    Sophie66

  • Thank you so much Lyn.  My family are wonderful, and would have me to stay in a heartbeat, but I have a little, very old Jack Russell, who is nearing the end of his life, but who has many toileting issues - ie he wees and poos randomly, and the person he normally goes to is closed over Xmas.  Friends (and my family) keep suggesting I should euthanise him, but he still enjoys his food and his little stroll in the field.  We rescued him, aged 10, from a Rescue Centre, and I feel that unless a dog has no quality of life left, you shouldn’t deprive them of what they have.  Sorry for the long explanation!  I told Hazel that my sons would do anything for me, but like most men ( in my experience) they are looking for solutions and aren’t that good at coping with emotional issues.  One of them suffers greatly from anxiety, and I don’t want to make this worse.

    thank you for the advice to talk to my surgeon about prospective pain.  I will do, and this time when I see him (19 December) I write write myself some questions to ask him.

    thank you for your kind advice and help

    love, Jo xx(Goolden)

  • Hi Jo

    Your little dog is definitely in need of you and it is so good that you wish to give him some good quality of life in his last few years. That makes perfect sense to me.

    Our pets become such an integral part of our lives and are so accepting of us warts and all.

    Perhaps you could contact the Macmillan help line as they have wonderful nurses who  you could talk to and discuss your issues with. Go to the top of this page where there is a tab called 'ask an expert'. I am sure they could advise you.

    It is a really good idea to write down your questions when you see your surgeon that way you won't leave and then think there was something that you forgot to ask.

    Sending you my very best wishes

    Lyn

    x

    Sophie66

  • Thank you again Lyn.  I will try and get in touch with one of the nurses.

    hope you are well and happy.

    very best wishes, Jo xx

  • Hi Jo

    If at any time you want to have a private chat you can send me a friend request and I will be happy to respond.

    All the best

    Lyn

    x

    Sophie66

  • Hi Jo , sorry to hear your suffering and my hubby is 15 months post radiotherapy and he suffers with the same problem. He also suffer with sinus problems so has been taking cold and flu capsules which seems to have helped a bit as not so excessive. Hes team did recommend he gets a steam mug which i got him from Amazon which was about a fiver. I dont know if it works as he wont try it but it might be worth a go. Anything is worth a try and is there no friends who could possibly watch your dog as i think Lynn is right maybe spending time with family is what you need. Sending you all the best Jo xx