Tongue cancer

[Eldestdaughter]

I am thinking of you Salival - your journey sounds very challenging and painful. Hopefully your side effects will abate soon and you will increase your intake in the days to come. You are courageous, I hope to read soon of better days for you. Hang in there!

[OzStu]

Hi Salival

For the dry mouth,  eclipse sugar free mints, peppermint.....available everywhere, supermarkets, service stations.  They usually have them in racks at the service desks.   They stimulate saliva production, I'm never without them, and it saves me having to carry around a bottle of water everywhere.   As for at night, get yourself a little portable humidifier to put near your bed, and try a chin strap that keeps your mouth closed while you sleep.  If you breath through your mouth much, your mouth dries out very fast.  The extra moisture in the air from the humidifier helps keep your throat moist.

Later on, after you have been cleared of cancer in your follow up tests.......you might like to look at Near Infared lamps to treat the treatment areas.

Two things you are going to have to watch out for are Thrush,  and dental decay.  Get obsessive about your dental hygiene...no sugar.  And watch out for signs of thrush......unless you are really lucky,  you'll get it.....repeating over and over again as long as your saliva level is low.   Nilstate oral drops from the chemist gets rid of it.   I gave up waiting for mine to come back after treatment and just stared taking one dose a day as a preventative treatment.  I've whittled that down to one dose ever second day and that seems to be the min level that stops it coming back.   If you are eating sugary foods, or alcohol,  etc,  or taking antibiotics, you become even more prone to it. 

If your mouth is sore, try Difflam Plus losenger.  They have Lidocain in them, numbs really well.  Also Difflam Plus sore throat spray.   The spray is stronger and faster acting,  but doesn't last as long as slowly sucking a losenger.   

[LindaG]

Hi Salival, oh goodness what a hard journey for you! So sorry you’ve had such awful side effects from the radiation 😢. You are amazing.  Great advice from OzStu which I hope can help you. I will keep you in my prayers. Hope your two boys are ok. Just get through one day at a time, sometimes one hour at a time. We are all with you and thanks for letting us know where you are at. 🙏💕 Linda 

[Salival]

One year anniversary since diagnosis (11 months post Surgery) and honestly all is going well.

Follow up ENT appointment this past Monday and first time they’ve stuck the camera up the nose.  All good and next appointment in 6 months so that seems to be a good sign.

Dry mouth is still there but it’s not too bad, mainly notice it when I’m in the air-con in the office.

Appetite is returning somewhat but some days I could take it or leave it.

I feel really lucky to have had it caught so early; if it weren’t for the scars and the slight tongue tie then it’s almost as if nothing happened at all!

[LindaG]

Hi Salival, so happy to read about your recovery. That’s such good news💕.  After such a hard process you have come through! Well done for being so courageous 👏. Linda G

[Lyndy60]

Hi Salival

I think I was meant to read your post today as I sit in the cafe at Austin Hospital having a well deserved coffee. 
I have just been to the Olivia Newton John Centre and has what I thought we be a breeze, a face mask made, mouth plaque and ct and mri scan. 
I’ll back track - I was diagnosed with TC in February and went into hospital for 10 days having it removed and my lymph nodes as well as a skin graft. I was also diagnosed with 2 melanomas at the same time of diagnoses so I asked if they could do that surgery at the same time which they did.

I too noticed a raised bit at the base of my tonque in October last year and it spread quickly that I got it check out then which the local Dr said was probably just a blocked saliva duct and it should just heal on its own. Well of course it didn’t and I saw another Dr in Jan and he quickly sent me to the Austin which diagnosed TC squamous cell T2. They went in just over 5 mm and although I was given the all clear through my body of “cancer clear”.... such a wonderful sound to hear, they said the margin was borderline clear/close, meaning there could be microscopic cancer cells there which doesn’t get picked up in surgery. So radiation was a surety and just a few days ago they suggested a small bout of chemo as well.

I have a small group of very supportive friends and two daughters in their twenties that have left home but are my world…as well as my 6 week old grandson whom is my little angel.

Anyway, sorry I’ve gone off track.

I hear the side effects to R,  which I start on 26 April (later than expected as I had to have a rotten tooth pulled out) is the first two weeks of tiredness, then likely a burning on one side of your neck as the radiation leaves your body (like sunburn but it will peel off), possibly burn sensation in that side of mouth as well. Taste my go but comes back, saliva production is effected too. Anyway, I will see and keep u posted. 
I was told that the day after my surgery I would be “unintelligible” but I was pleasantly surprised and my normal voice is back, I just have a bit of a dropped lip. 
If you need anymore help or questions please feel free and I’m glad I have found a site specific to Head and Neck Cancer.

Hugs 🤗to everyone on here.

lyndy 🌸

[Lyndy60]

Thanks Budgie

i will have a look at this site too.

cheers 

Lyndy 

[Lyndy60]

Hi Salival

i just sent you a message but being new to this site I didn’t check the date of yours and realise it was a while ago and you have come out the other end 👍

I have read what you have been through and your strength and determination is admirable. 
I do hope however that I don’t get to go through a lot of what you said, but it is good to get a heads up, and if I have to, I WILL and look at better health 🙏down the track.

All the very best health to u. And enjoy every minute with your dear family and friends.