Hi everyone
I’ve just started week 5 and not sure what’s best to use at night? I’ve been given a tube of oralieve gel but it doesn’t seem to do much. Are there other products on prescription I could ask about or buy myself?
regards
Jane
Jane, I had saliva Orthana and Biotene gel/ spray on prescription. The Biotene gel was the better of the two. The best for me was a pocket water spray.
Send Christ Curtis from The Swallows an email. The charity does support boxes with all sorts you can try. They are free
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Insane I used biotene gel and small sips of water during night. Later as the thick gunk went I used and still do xyimelts at night time. After treatment finished and yiur mouth settles down I found sugar free gum helped to stimulate my saliva glands. I also had around 6 mjnths of auricular acupuncture which helped me it doesn’t work for all. This inhad to pay for as my hospital didn’t offer it.
hugs Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hazel did you find your saliva increased after one year or did it take longer. Some days I find it worse than others. I'm about seven months post RT. At times it's ok and other times it's very dry .
Hi it did increase in increments but dry spells did continue to happen no pattern couldn’t say because it was hot or anything. We spend a bit of time in Spain snd the weather there didn’t make it worse or better.
I would say by a year it was around 70% then over the next few years it slowly improved. Now I’m at a stage I never thought I would be in most of day my mouth feels pretty good I no longer need water at close hand I can garden for a few hours without drinking. But nighttime if if I occasionally nap in day I wake with dry mouth. Hence the 1/2 an xyimelts at night that gives me a solid 8 hours sleep it’s been months since I needed a sip if water during night but I always take a glass with he.
Hope this give you an idea. My cancer was tonsil so my mouth and cheeks took a direct hit I list my uvula due to radiotherapy as well which doesn’t help you’ve no idea what ir did until you’ve lost it. !pd it melted away like my tonsil and anterior wall of tonsil.
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Aw thank you for that Hazel that gives me an insight into things a little better. I find my speech gets effected at times when my mouth gets very dry. I tend to have a bit of a lisp that I never had after the operation on my tongue and neck dissection but the RT made it worse . I got zapped on my left side of my tongue and neck. My muscle strength on my tongue was much less than it should have been for my age thats what I found out from the iopi machine and now I'm using the machine daily to try and increase the muscles in my tongue. Hopefully that might get rid of the lisp at times . Jackie
I'm constantly using a gel, spray, drinking water or chewing gum. Just hoping it gets a bit better by end of my one year.
I still got improvements well past the 5 year mark albeit small ones but as they say every little helps.
Try using a small spray bottle with water in it to refresh your mouth as sometimes we drink and wash way what little saliva we have. Thus tip was passed on by a late affects hnc nurse.
hugs Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
I'm about seven months post RT.
A good time to try acupuncture. Check out my blog.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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