Tonsil Cancer

Hi Bright lights. So sad to read that your xerostomia is so bad. 
Perhaps you can ask your hospital about a trial that UCL is running with Eastman Dental Hospital. It’s a gene therapy trial called AAV2-hAQP1 for those of us who have really poor saliva after RT. 
Mine has largely recovered to acceptable levels but I still have to use a xylimelt at night and chew gum through the day. 

Hi Susan

One thing an Indian doctor who was interested in my case advised me to do with the meat was to add milk or cream to it when can cooking as that tends to break down the fibers and makes swallowing easier.  Apparently this technique is used a lot in Indian cooking.  It worked for me and made chewing and swallowing easier.  I will also admit that a nice pale ale is, for me, a good saliva replacemen

Hi Dani, thank you for that information.  I will ask the Oncology consultant about this trial at my next appointment.  

Thank you for your kind response

Hi Susan,

I was also diagnosed 4 years ago and my mouth is extremely dry. Swallowing can be challenging at times too. This summer I came across a product I had never tried before: clinutren Thicken up clear. It does what it says...it thickens up any liquid.  When I eat i now mix this with cordial and it does help me swallow food that are at times challenging due to lack of saliva. I find it works better than water. 

I hope this helps.

Fab1

Hi Susan

I'm feeling exactly the same as you. I'm on week 11 post treatment and just don't want to eat. I'm told, and hold onto this, that it may improve but reading your message makes me realise I need to rethink. I can't get near chicken, can't get near anything yet but what I do know is that there are some amazing alternatives to meat now. Especially nice is the Quorn pasty. I remember it well. Both of my sisters are vegan and they have a great diet. My big sister has loaned me her cookery books and other than the fact that many of the ingredients in the recipies still burn my mouth, I will look at them at some point when my situation improves. 

I wish you every good wish I can think of. 

Hugs

Hi Fab1

Thank you maybe i could try clinutren.

Thank you for your kind response

Thank you for your kind response,  I have tried chicken cooked in a slow cooker, which tenderises the meet easy to chew. Everyone is different ️ so hang on. ️