Hi Everybody

Hi Valley and welcome to our little community. Great that you have made some progress since treatment ended.

I am a great fan of acupuncture and still have top ups. The first session was a real eye opener and I went into it with no preconceptions that it might work.....at all.

I have two posts on it in my blog 

HERE

AND HERE

I haven't had much problem swallowing thank heavens but my taste and saliva were more problematic. I can say that at two plus years post RT I am still seeing improvements.

I can go all day without even thinking about my saliva but I can get a sort of burning feeling in my mouth and a sour taste. 

Xylitol chewing gum is my saviour when I am out and produces instant saliva. I don't have to chew it  all the time either, parking it in my cheek to chew just now and again works

Have a look at the blog if you have time and I really recommend you at least try needles.

Hi 

welcome to our small community group well done on completing treatment and now recovery. I am almost 3 years post radiotherapy for tonsil cancer with several affected lymph nodes I am still getting improvements especially in dry mouth. So don’t get down we do continue to improve. I too had acupuncture and found it helped immensely with my dry mouth. Unfortunately since COVID my acupuncturist has retired am struggling to find another who can do auricular acupuncture but I’ve found sugar free gum helps. 
I wouldn’t hesitate to say try it I had saliva improvements from the first session .

As for eating I am now almost normal spicy thjngs for me I can’t eat  but now even chicken snd bread is fine  . I was one of the few who didn’t loose taste but I did have an heightened sense of taste and ti some extent still do  I was n g tube fed for last 3 weeks if treatment and first 3 weeks of recovery  I did rely on ensures at the start  

hope this helps 

Any questions please ask 

Hazel 

Sorry to hear about the ongoing issue with taste and lack of saliva. It does impact on enjoyment with eating. I had my first radiotherapy in 2013 and my doctor told me the same as yours that it can take 2 years to see improvements. There have definitely been improvements over the years but my taste has never been the same. Some things just taste different. I still have to ask my husband to check what I am cooking to see if the taste is right as I can’t tell properly. Over the years I have developed new likes in foods that do taste O.K. and have even had to change from drinking tea and coffee to drinking hot chocolate because of the taste difference. Fortunately I can get away with the extra calories.

Don’t be disheartened though as things do definitely improve and that metallic taste does eventually go away. Keep trying different food and one day you will be surprised. The enjoyment around food will return.

I find for dry mouth that a Xylimelt stuck to my gum really makes a difference at night and I don’t wake up with a really dry mouth like I used to.

During the day apart from water I suck on a dry mouth lozenge called Therabreath that I buy from the Chemist and this really helps.

I did try acupuncture but found it did not help me too much but I think that is because I have been zapped twice with radiotherapy now on both sided of my mouth at different times so my poor saliva glands are almost non existent. However I have read a study that gave some really good results for dry mouth from acupuncture so I would definitely give it a go and I know there are people on this forum who have also had really good results.

Best wishes to you with your ongoing recovery.

Lyn

Thank you all for your comments, they are much appreciated.  I have been in touch with my local Macmillan centre and they are arranging some acupuncture sessions for me.  It's also comforting to know that other people have taken a long time to see improvements and it's not unusual.

Let us know how you get on. It’s important that it is Auricular acupuncture that you get. Best of luck 

Hi

I had similar problems and did not eat a thing for 6 months...it seems like a long time but when things improve.. they improve quickly...two years later my palette is back to normal and I enjoy the foods I always liked with a small number of exceptions... stick with it and you will be fine

Good luck

• Chas

Two years plus down the line and you can still see improvements.

I finished my treatment in August 2018 and still find my swallow can be very weak.  I can swallow the first few mouthfulls but then get swallow fatigue and it becomes much more difficult.  I've learnt to eat smaller meals more often and obviously modified what I eat.

My taste isn't what it used to be either although it has improved enormously from the frist few months of treatment.  I still use Biotene mouth wash during the day which I find helps with the unpleasant taste in the mouth.

Good luck with the auricular acupuncture - I've read some very positive posts on the forum.

Linda x

Thank you

Thank you Linda.  It's good to hear of people in a similar situation.  Swallow fatigue is a very good name for it!