Hi,
I've read some sad stories on here, so hopefully my experience is a ray of hope to some.
I'm 6 weeks post RT & CT to mouth/neck/throat, I'm doing extremely well; I had really bad neck burns which were weeping, I was nil by mouth for a couple of weeks during treatment, I couldn't even use mouth wash, totally dependent on the RIG. I was in a real low place during treatment, I spent most of week 4 crying. Since treatment stopped I've been so lucky, I can eat many things, my oral ulcers healed quickly & swallowing soreness was quick to heal.
I've not used my RIG for 6 weeks, no pain killers for 4 weeks, so can't complain! :-) Thankfully I have bounced back quite quickly.
However I do suffer from a dry mouth. It affects my swallowing of dry foods, but not too bad during the day. The issue I have is, it wakes me at night. I use Xylimelts and Oralieve gel, which help, but I wake around 10 times in 8 hours sleep, for a sip of water.
I read on a different thread here
https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/updates/264168/dry-mouth#pifragment-13906=2
that coconut oil and bioXtra (which I see you can buy from Amazon) can help.
Any other tips?
I also have tinnitus quite badly all day, which can affect my hearing and my concentration. I'm yet to return to work, and this is my main concern for going back. I believe this is from the CT (Cisplatin).
What are peoples experiences with tinnitus?
Many Thanks and best wishes
Mark
bio:
Early 2023 I was diagnosed with secondary cancer (Squamous cell neoplasm) in neck lymph nodes. They could not find the primary cancer (I had tonsils removed). In June - July 2023 I had Radiotherapy & chemotherapy treating my mouth and throat, as well as Lymph nodes. I'm aged 52 male from UK.
Hi. I have Bioxtra mouthwash on prescription. I used Xylimelts for quite a while. Have you thought of trying auricular acupuncture? I had several sessions & they helped tremendously with saliva production. Chewing sugar free gum helps too. I use ACT gum from iherb aswell as watermelon gum. Salivix pastilles from Amazon are good too. I had tinnitus for a few months then it just stopped 
Salivix pastilles from Amazon are good too.
Hi Blod
How do you find the Salivix? It has some good reviews.
It’s just become available on prescription so you could get it free.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
I get BioXtra mouthwash on prescription. The cheapest source of xylimelts I’ve found is https://www.hope2sleep.co.uk/xylimelts-dry-mouth-discs.html where they take VAT off
The cheapest thing during the day is to have a handy small spray filled with water Spritz your mouth when it’s dry Its more effective than sipping water
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Salivix is now out of stock.
Manufacturing problems
I have those on prescription too
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Like you I was offered the spray so thought I might try it.
It’s not bad and you can’t taste the mint
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
