Today I went through the first stage of tests to see if I can go on a new gene therapy trial which might help my saliva glands to become active again.
Just to explain my background briefly: 3.5 years ago I was diagnosed with left tonsil cancer with a spread to neck lymph nodes and then a scan showed up a spot in my pelvis too so stage 4 and and palliative care was what I was offered. To cut a long story short we got a 2nd opinion and this was accepted by my health providers at Leeds, to go for radical treatment to the tonsil / neck, chemo and then radiotherapy. Then a separate radiotherapy to the hip. I am now 3.5 years clear of cancer.
But, as a result of 35 session of radiotherapy I have very little saliva which I cope with during the day by chewing gum all day and drinking lots of water but at night is when it is at it's worst I use a variety of gels and spray and tape up my mouth, none of which really works and so I get up 3/4 times a night to swill out my mouth and reapply said gels and sprays, exhausting.
So, when I found out about this gene trial I followed it up.
The screening tests today were the first of 3 sessions of tests after which if I am accepted on the trial I will be given a placebo or an injection into the saliva glands of DNA which it is hoped will somehow, don't ask me how, activate my glands to produce saliva. A previous stage of the trial has had, I understand, good results. If I have the placebo at the end of the trial, I year, I will be given the active version.
The trial is being conducted across the USA, Canada and the UK. One of the places in the UK is Leeds Dental Hospital and luckily I live and was treated by Leeds.
The info I have says," This research study is to see if AAV2-hAQP1 improves dry mouth symptoms and the amount of saliva produced, and to see if it is safe and well- tolerated in people with dry mouth as a result of receiving radiation therapy for the treatment of head and neck cancer...The results may also help us design better treatment for future patients."
I believe the trial is still open for new enquiries.
Here are some links if any one is interested:
https://www.clinicaltrials.gov/study/NCT05926765
Happy to try and answer any questions, but obviously I'm only the guinea pig 
