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Tips on dry mouth from tongue based cancer after treatment

Phil.
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Hi All

I had tongue based cancer which had spread to lymph nodes on right hand side of neck, caused by HPV virus. I had a 6 week course of Chemo and Radiotherpahy which finished 18th Dec. I had a food peg fitted which I hated, but ultimately saved my life and removed last week of March.I am in recovery now and doing well. I was always into keep fit, so my focus has been getting my fitness back, I believe all helps mentally with how I feel.  However my mouth feels like I have permanently swallowed sea-water as a result of what saliva I have being very thick and salty. My mouth is very dry and also has a numb like sensation as though you have eaten something hot, hard to describe. Food is 25% enjoyable, 75% functional as lack of saliva means I find it very hard to chew some foods they just dry up into a sticky mush in my mouth,  I appreciate this is a waiting game over next year or so to see if or how much of my saliva returns as this treatment can destroy your saliva glands and each person is different. Any tips from anyone who has experienced this appreciated, and also if you did get your saliva returning to a greater degree. I have tried Biotene, Artifical Saliva all of which do not really do that much, I also realise I am very lucky to be at the stage I am compared to others with this diagnosis. 

  • Offline in reply to Phil.

    Hi Phil

    Just need to communicate with someone and you're the one.  Still waiting for results for 17th Jan.  Had a letter to say I have a telephone appt on 9 Feb.  Feeling like I'll probably die of heart failure before then.  Tried to contact the ENT consultant who arranged the MRI yesterday.  Begged his secretary to ask him to give me some idea what's going on.  He knows how anxious I am.  I've heard nothing so taking that as a bad sign.  If it is my tongue, he didn't see it when he examined me (twice).

    Really worry about how my glands are reacting.  Twice, I've had horrible tingling all around my neck during the night that goes up the back of my head.  Of course, I take this as a sign it's going to my brain. Also, a few short dull aches in ribs. Lungs???  I can't seem to find anyone who has had tongue cancer that has metastasised.  

    I'll be taking beta blockers and diazepam when I get the phone call.

    How are you doing?

    Diane

  • Offline in reply to Kingfisher66

    Hi Diane

    I am fine, I know how hard the wait is and not easy, however try not to 2nd guess yourself.  The body can do strange things when under pressure and stress. Mine did, every thought was around what this was and my body reacted to the stress of that situation. I was like a zombie, I was doing work calls and at the end of an hour call I could not remember what we had been talking about. They probably will not tell you anything over the phone regardless, will wait and tell you on your appointment, that is probably the standard process.

    They will be used to people being anxious, they just follow the process and system.

    Whatever I say or anyone else does, you will naturally worry until the appointment on 9th Feb.

    Phil

     

     

     

  • Offline in reply to Phil.

    Hi Phil

    Going from feeling perfectly normal to sheer terror.  My poor partner is taking the brunt of it all.  Lost my beta blockers this morning.  Must have thrown a full packet away by mistake so major panic attack. Kind Doctor at our local minor injury unit agreed to give me a prescription to get me through the weekend. I think she made a mistake because the pharmacist has given me bucket loads.

    I have a question regarding radiotherapy.  Does the beam work from outside or does it sometimes go in through your mouth?  Did your skin burn badly over a large area? It looks like a massive piece of machinery.   And do you go home after each session?  And did you have a PEG fitted?  I'm just trying to get myself prepared.  Feeling like I have a lump in my throat tonight.  I've felt that before and it sometimes goes away. Surely it hasn't grown into my trachea. Oh gawd.

    Had a trial run of Diazepam yesterday to see if it makes me calm enough for the phone call.  No where near.  Going to have to add to the cocktail.  My two sisters are coming over.  They are so convinced that I have extreme health anxiety that they have gone to great lengths to organise a therapist for me after Wednesday.  I've told them all my symptoms and they're just not having it.  In fact,I actually think it's going to hit them harder than me.  I know all I'll need is a tiny bit of positivity from the consultant and I'll build on that.  I've read so many encouraging things about our amazing oncologists and the current technology and treatment.

    Off to eat some more.  Trying to fatten up.  Not easy. Grab handfuls of nuts, cake, chocolate every time I pass the kitchen.

    I'll let you know after my call if that's ok with you.

    All the best

    Diane

  • Offline in reply to Kingfisher66

    Hi Diane

    i understand how worried you are and the stress this places on anyone.

    Firstly it might be something else, but Radiotheraphy lasts about 15mins each day. You don't feel anything other than a bit of warmth in the actual process .

    You  special creams to help the skin. My skin stayed ok, throughout, partly because I did everything I was asked around skincare. 

    Generally with this treatment as standard you get a Foodpeg fitted. Again no one person is the same in terms of how the mouth/throat reacts to the treatment. I relied on the peg totally after about 3.5 weeks, the other person I know didn't need to use it until his 5th week.

    Keep me updated and depending on the diagnosis, then let me know and you can call me

     

    You get a mask fitted to your face, then when you have the Radiotheraphy, you put  this on and they fit it to pegs the side of the machine. It is tight but has to be, however if you lose too much weight then through treatment you will need to have another mask fitted.

    I was very toned and fit at the time, around 61kg, I am only about 5ft 5. I kept my weight stable until about week 5, then it started to drop, I ended up at around 57kg.

     

    Thanks

    Phil 

     

     

     

     

     

  • Offline in reply to Phil.

    Hello Phil

    I wanted to tell you my good news.  I can hardly believe it.  My consultant phoned this morning to tell me that there is no cancer.  I have some nodules on my Thyroid that look innocent.  I've just spent 10 horrendous months absolutely convinced that I had cancer.  All the symptoms fitted.  I had even worked out that it had become advanced.  I can't quite believe what the mind can do to the body.  I've had real symptoms.  I'm going to take a while to process what I've been through and I will probably get some professional help.    I've learnt so much about the disease and spoken to some amazing inspirational people.  

    Thank you from the bottom of my heart for your kind words and helpful information.  I wish you all the best in life.  

    Much gratitude

    Diane 

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