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Hi everyone! Hope u are all as well as u can be! I'm really new to this, still trying to figure out how to navigate around it lol. Wish I'd knew about this wen I was going thru it all, there's loads of info on here i didn't know about! Dani and Hazel, I've read both ur blogs, so very interesting and informative!
I finished 35 sessions of radiotherapy 1st Feb, for SNUC, rare cancer in the sinuses, since then I, like so many of u on here, have zero saliva. I also have an extremely cracked tongue? I've been told that's down to having no saliva...
Does anyone have any good tips or ideas to help with the cracked tongue?
I'm not sure if it was Dani or Hazel but someone mentioned Xylimelts which I've never heard of and Boots in my town here have one box left so someone has been dispatched to Boots as we speak! I really hope these work for me, I'm very excited! Xo
Hi Dee. So sorry you've had to contend with cancer but glad you have found us. The community has lots of people ready to support and give tips. I don't know what I'd have done without it in the early days and still now.
Xylimelts are good and work if you have a little saliva. 16 months on from treatment I still use one at night. There are various moisturising mouthwashes that you should be able to get from your GP. Biotene is very soothing and worth a try. You can also get it in a gel which you can use at night.
If your salivary glands get hard when you're eating it means there is still some functioning tissue there so it might help massaging them till the hardness goes away. With a little luck you might be able to open up a few channels to get some saliva in your mouth.
PS thanks for reading the blog And I’m glad you enjoyed it
I have to say that acupuncture has given me significant improvement. I suppose it's difficult to say whether that improvement would have happened anyway but I can tell you that on my first session my nose started running and by the time I got to the car I had a mouthful of saliva and the effect lasted all day. I had a few weekly sessions then we settled on fortnightly maintenance. Now that Covid has stopped all that I do miss it. It's important to find a practitioner who understands the protocol. It's called Auricular acupuncture and involves needles in your ears and fingers.
I also chew gum. Amazon sell xylitol gum called Peppersmith. It's more expensive than the others but it has no sweeteners apart from xylitol which is best for your teeth. I don't have to chew it all the time, I get away with parking it in my cheek and just having the occasional chew.
Hope this little helps.
16 months on I can eat more or less anything without resorting to water with every mouthful, though the occasional slurp is needed with dry things like bread.
Hi Dani, thank u so much for replying! Hope u are well!
Yes I've got Biotene mouthwash and gel, I have to keep the gel on the roof of my mouth during the night and dip my tongue into it, I have sensitive teeth and 2 very sensitive teeth at the top and if the gel gets near those it's extremely painful so I'd started using glandosane spray which is very effective but of course it gets swallowed very quickly!
I have no saliva whatsoever, I'm wondering if the xylimelts will work now but I'll try! I tried Orthana but they only work with saliva and only gave me sores under my tongue!
I read in ur blog about the acupuncture and wrote the name down, I'm really interested in that too, wen this is all over I will def look into that! And I will look about the gum also!
Take care Dani and again thank u for replying!
Hi again Dee
you mention Orthana. have you tried AS saliva Orthana. I had that for a while. It didn’t taste that nice but it did help. Frequent spraying. I can’t imagine having no saliva. Poor you. Macmillan somewhere have a list of mouth products. I’ll see if I can find them.
Yes here it is
Hi Dani, thank u for replying again, u are very helpful, thank u.
Yes it's AS saliva Orthana, but again only works if u have a certain amount of saliva. I tried the tablet and had to use 3 at once and like I say it gave me a sore under my tongue!
I don't have taste or smell anyway Dani, that disappeared over 2 years ago as one of the symptoms, although I could distinguish between sweet, savoury etc, now I can only pick up a minimal taste of sweetness, I'm told that's a good sign!
I'm googling that acupuncture and there's a place in Belfast does it, will def be making a trip hopefully soon!
And thank u Dani for sending the link with the saliva products!
Try AS Saliva Orthana SPRAY
Hi This is Hazel sorry for nit replying earlier just seen your post thank yiu for reading my blog hope it helped. To start with the xyimelt take a sip of water swill round your mouth just before yiubare ready for bed to attach the brown side if the tablet to your gum with yeh white part on inner cheek ,I still tonghisnday use 1/2 one every night and wake to sip water but my sleeps not disturbed any nite. Yes acupuncture was a massive help to me it really did kick start my salvia glands .
you can buy them from Amazon or the mouth ulcer company online check around for price s I also chew sugar free gum most of the day.Booota also do a handbag size dry mouth spray it’s aboutbyhe best tasting one it’s nit like fish oil which I find the others are. Have you checked you haven’t got oral thrush I wasn’t plagued with utndor quite a while .You May need a nurse to check for you .
good luck and onwards and upwards
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can
Hi Hazel! Hope u are well!
Thank u for replying and thank u for the tips!
I got the Xylimelts today from Boots, will try them tonight so fingers crossed!
Yes the Glandosane spray is handbag size too, not that I need my handbag these days lol...
I have no taste anyway Hazel so it wouldn't matter!
Yes I had oral thrush twice and a therapist friend of mine thought my good gut bacteria had probably been damaged thru all the treatment so I've been taking high strength probiotics and the thrush hasn't returned but my tongue is still all cracked and feels like sandpaper, it probably is due to having no saliva....
its early days for you let’s hope you do regain some saliva. As we know until yiuveou lost your saliva it’s impossible to explain to anyone how horrendous it is. Do try acupuncture in the meanwhile there’s a lot of self massage videos where you can try massaging the saliva glands using downward strokes it’s worth a try. If xyimelts didn’t work don’t give up keep trying as tthing gs do keep changing ,There’s is a drug called pilocarpine but it does have string side effects peruse sweating being ine if them ,maybe talk over with your team.
take care Hazel xx
Hi Hazel, thank u for replying! Hope u are well.
Well I tried the Xylimelts, they seem to kinda foam up a wee bit in the mouth and I find if I rub my tongue along them then I get just enough for a small swallow, still need the water thru the night tho. But I shall persevere! I'll Google the Pilocarpine Hazel, thank u. I'm having the odd flush anyway at the moment lol so not sure if I want more!
Wen this lockdown is all over I'll def look into the acupuncture!
Thanks Hazel, take care
Hi Dee , if yiu git a little foaming that’s good news yiu must have a tiny bit of saliva around so something to work with . I still so water several times in the night and I am 22 month post radiotherapy. While you are waiting for lockdown look online for massage techniques for encouraging saliva glands I found a few when I finished treatment in yiu tube nothing aggtesieve just gentle downward strokes .
Keep in touch Hazel x
Hi Hazel, thank u for replying! Yes I'll have a wee look at the massage techniques, again never knew that was possible, can't believe these pieces of vital info aren't passed on during therapy!
Take care Hazel,
No problem ,hope it helps and the xyimelt helped last night it will improve I remember thinking in the early days will I ever have saliva again but slowly slowly the glands seem to compensate for the ones that have been fried. I am now 22 month post radiotherapy and would say during day time I have long periods where I didn’t even notice anything different sat here typing this and would say 95% normal mouth.Honestly I never thought I would say that , I can also eat a packet of crisps without water ! Big result for me I missed crisps .At night time I still use 1/2 xyimelt I ve read somewhere that around 0400in the morning the saliva gland work slower even in normal non radiated people so maybe I have to keep using them .
good luck and hang on in yiu will get there.
Hello again Hazel, yes I really miss crisps and peanuts too! I tried a couple of quavers but couldn't get them swallowed plus cos I've no taste they tasted like balls of salt!
I miss pizza the most lol.
Well I got 5 and a half hours uninterrupted sleep last night so that's a first in a long time!
Thanks again Hazel, have a bag of crisps for me lol, take care
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