New to the group seeking advice

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Hi everyone.  My husband has been diagnosed in May this year with stage 4 Squamous Cell Carcinoma which is in his jaw and tonsil and has just finished 30 sessions of Radiotherapy and 2 rounds of Chemotherapy.  The treatment (as I am sure you will all be aware) has been really tough for him and it has been so hard to witness him going through this experience.  It  is now two weeks since he finished  treatment and as expected is experiencing some nasty side effects which is being monitored by his Consultant Radiologist.  He has been given  Oramorph which is helping him  cope with the pain from the awful radiation burns and ulcers in his mouth, throat and outside of his neck  but he is really struggling to cope with the constant  very thick sticky saliva he is experiencing.  His Consultant has given him a Neutraliser and this helps a little but he still seems to be producing copious amounts of saliva which has been happening all the way through treatment and has been getting much worse since his treatment ended.  I just wanted to ask others who have gone through this awful experience if they have any tips or advice on anything my husband can do that might help with this.  We know everyone is different of course but we also wondered how long it took for other patients who have experienced sticky saliva  to see an improvement in this.  We just need some hope that things will improve.  Thank you for reading. 

  • Hi Welshpony welcome to our small community group well done  to hubby and you fir getting through treatment. I am 3 years post radiotherapy for tonsil cancer with several affected lymph nodes and now living life ti the max. The first 6 weeks are hard in my case I had nebuliser snd dehumidifier for bedroom .I was around week  9 before mucus went as quickly as it came. Try getting him to sip soda water or flat Diet Coke or diet dry ginger it can help alleviate it. By the 3 month stage things  will look different. I was also given carbusistine to help thin the mucus did it help can’t say either way. 
    My blogs below with links to other sites if May help you to know there light at the end of the tunnel 

    Any question s just ask. 
    Hazel 

    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/

  • Thank you so much for your reply which is so helpful and I am so pleased to hear you are now back to normal.  I cannot tell you how good it is to hear that there is light at the end of this awful tunnel.  He will definitely try sipping soda water from today and I will look at getting a dehumidifier for the bedroom as he finds the night time the worse.

  • Hi 

    I had sticky mucous for a few weeks which just vanished overnight by six weeks. Drinking sips of Diet Coke or diet ginger ale helped. I just got used to spitting it out apart from that. I have a contact who has been given scopolamine patches off label which seems to have worked wonders. Might be worth asking, 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Hi you’re welcome. I got mine from Amazon it was a tear drop shape called cooL mist I used it all through treatment as well. 
    Hazel 

    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/

  • Thank you so much for the advice.  My husband has a follow up with his Radiology Consultant this week and we will ask if the scopolamine patches could help my husband.

  • Hi welsh pony

    Sorry you find yourself here for your husband but you will get great support and advice here.  I had my treatment many years ago and I remember I produced copious amounts of (stringy)  saliva before my radiotherapy finished.  I could not comprehend how I was producing this amount it was most alarming and I had to deal  with this constantly. I did have some advice on swallowing but my saliva kept flowing and had to use paper towels constantly to help me deal with this. What I will say is mine resolved itself not too long after things started to settle down after my treatment, so I hope this gives you some hope. I think I remember being talk of a medication that can help, but I never had this. Hopefully your radiology consultant has some answers to help with this.

    I hope this helps

    Nicky

  • Thank you sporty Nicky I am so glad I found this site and it is so helpful to hear from people who have experienced this and come out the other end of it. My husband has been constantly using kitchen paper too.   He says for him trying to deal with the saliva  is much  worse than dealing with the pain from his radiation burns and ulcers.  We have been given some really good tips on this site and one mentioned a drug that is used to help with this.  We are going to ask about this when we see his  Consultant Radiologist next week.  Many thanks for giving us some hope. 

  • Hi Welshpony

    I understand that dealing with this excess saliva is another thing to deal with on top of everything else.  It was like my salivary glands went into overdrive.  One thing, I still produce plenty of saliva (no way near at the level when I had my problem) and do not have a dry mouth. So maybe on reflection it was a good sign for me, (as like we understand we are all different),  that I was still producing saliva.

    Best Wishes

    Nicky