Base of tongue cancer

Hello there,  as a fellow wife I can feel for you. Reading your story,it reminded me about my husbands journey. He is now 15+ mths post treatment and doing fine,considering.   Everything you are describing seems common,change in taste is one of it. Like you, my husband lost some of his hair,right across the bottom of his hairline above the neck,it's slowly starting to regrow,so I have hope for yours to come back too. As to your next scans etc. these are part of your recovery too, with this treatment having a very good success rate, you must be very unlucky not to get the results you hope for,so stay positive,you have come this far,well done, hugs Mel x

Hi  thanks for responding,  I guess you understand how difficult it all is especially the eating ! I ended up eating separately from my husband whilst going through the treatment as he used to get so upset watching me struggle with my food. I am pleased we are now eating  together again! Good to know the hair is starting to come back , mine feels so thin right now so I'll be happy when the growth begins. I'm keeping everything crossed for the scans , it's just all the waiting that gets to you! Glad to hear your husband is doing well , gives me hope! 

When it came to our eating arrangements, it was pretty much the same here,also he kept telling us,just eat what you fancy,never mind me. We still kind of have to choose food what we know he can have with no problem,his throat is still a bit delicate, the choice is getting better,each week goes by. Waiting for results has always been nerve racking,his next appointment is on the 8th. On this note, hope you have a nice Easter Mel x

Hi there Cat18 

I am now over seven years clear of RT for base of tongue cancer. I too lost that crescent of hair at the nape of my neck. It's due to the X-ray exit beam. Chaps use facial hair where the beam enters too. The good news is it grows back. If your lymphoedema (under your chin) is only slight then gentle massage will fix it. I have a short video of how I did it on my blog.

Taste will return. Just keep challenging yourself but note the foods that irritate and come back to those a month or so later.

The other exercises you should be doing are your swallow and jaw exercises. These are for life. I still do mine

Keep going. plod on. By six months you'll be a different person

Yes I’m trying different foods all the time , it’s trial and error but I’m grateful that I can now eat again albeit still mainly soft easy to eat foods .. Good luck for his appointment and have a lovely Easter too ! Helen x

Thanks for your response it’s good to hear you have been clear for 7 years that’s amazing! It’s all a learning curve and not one any of us wanted really. I am looking forward to being much further on and getting back to normal life! I will take a look at your blog thanks. 
Helen 

Hi and welcome from me.  Sounds like you are doing really well. Try not to worry.  There is an extremely good chance that the PET scan will show complete metabolic response - the words we hear then the treatment has been successful.  There may be some artifacts left from the trauma of the brutal treatment but they will keep a close eye on them and invariably they are signs of healing rather than residual cancer.

Over time you will find out what works and what does not with regard to eating and life in general.  I am now over 6 years since diagnosis and 2 post CRT and seem to have come to a happy new version of my life.  Some differences to what I had before - chocolate as a no-no as are most sweet things.  Steak will probably never be eaten again by me, but there are plenty of choices still available to me.  Try things and find out what works - and don't be surprised if what works this week does not the next.  It is a long and slow process to recovery.

If you have a look at the bottom of my profile you will find some links that my hospital recommended to help me self manage the lymphoedema which it sounds like you may have.  In many cases the hair does return once the follicles have recovered from their RT bashing.  Not the same as you, but I went without shaving on one side of my face for quite a while before the hair returned with a vengence!

Stay with us

Hi Peter

Its sounds like you have been through the mill too and I must say it’s been a real eye opener , I have had some bad days when I thought my mouth would never be the same again , full of ulcers and really alien in every way , I have a real appreciation now for taste I didn’t know how much it impacts the way you feel when you eat ,especially things you used to like before.

I am glad I joined this group as I feel only people that have been through it  both physically and family can really understand how it feels regarding the treatments which I found quite tough towards the end of the 30 days. 
I cant do biscuits ,chocolate or fruit which I used to love .. but still experimenting in hope I can find alternatives.

no hair growth yet but I suppose it’s early days 

Quick question actually … I have a very dry mouth at night almost like all my saliva has disappeared completely, apart from water by my bed what worked for you if you had the same ? 
thanks 

Helen 

Good morning Helen, just a quick input, Keith still has a very dry mouth, 15mths after finishing treatment, he still gets up during the night for a drink of water, his saliva is still not what it used to be, even with supplement/mouthwashes etc, from what I learned of this site,it can take some time,I guess everyone on here has their own experience when it comes to this side effect and even out and about, my hubby always has a bottle of water close by. Hope this helps.  Mel x

Yes I have a very dry mouth.  Water and chewing gum during the day.  It may be too early in recovery for you and gum.  Sparkling water I find good as it soothes my throat as well as wetting my mouth.

At night I have Biotine on prescription.  That is not really a saliva replacement nor a stimulant - at least for me.  Instead it coats my mouth and helps stop it drying out. I normally have to do it 2 or 3 times a night.  It is not the most pleasant of things as it is sticky and full of Xylitol, but it works and you get used to it in time.

You will find that drinks with lots of tannin in them - tea, red wine etc - are not good for you as the tannin drys whatever saliva you have left.  Sometimes you just have to suck it up if you like a good cup of tea and manage the after effects - our new normal!