Hi everyone
We’ve had a bad few days starting with Ken’s PEG Tube falling out and no one knowing how to put one in for 7 hours!!
Anyway that crisis has now been resolved but Ken is really suffering with a dry mouth. The stringy mucous stuff that was choking him and making him gag has gone, only to be replaced by a mouth as dry as the desert!
Ive found an NHS Trust care leaflet for H&N cancer patients that suggests a nebuliser with saline solution. We’ve never been offered this. Should we ask for one? Who would give us one? Has anyone used one? And if so, does it work?
Also, while I’m here......how do we instigate acupuncture or are we trying to run before we can walk? Ken is just over 4 weeks post 30 radio treatments and 6 chemo sessions.
We have XyliMelts (but he can’t use them right now as there’s no saliva to make it stick) and Caphosol. We also have Glandosane synthetic saliva spray but we were told not to use it due to its acidity and effect on Ken’s remaining teeth. I’ve tested it and it’s PH 5.5. Should he use it? And what about Biotene mouthwash?
As ever, grateful for your thoughts and experiences. Apologies for so many questions. Xx
Hi Yes it has and ph leval is neutral . I’ve had no problems with it been on it 18 month was at Dentist Monday she said considering what ive gone through my teeth gums and mouth are in an excellent condition ,I have hardly any plaque ,plus always use duraphat .They also do a mouth spray just picked that up today so can’t comment on it haven’t tried it yet have been using a bit dry mouth spray for those days when I am out and about .
H x
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
Thanks. I’ll order one and see if I get on with it
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Are you with private or NHS dentists? I shall never go to my NHS dentist again. Through the years l've gone to both but went to my last one because I could walk there. My husband has just gone private but wondered if you can get NHS prescriptions with private dentists? After my treatment l shall speak to my Consultant because l'm currently with no dentist which worries me the way my mouth is.
Val
Private here. No free NHS capacity where I live. I have to pay for private dentist prescriptions. I shall ask my doctor as Welsh scripts are free.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I just got Gelclair from consultant. Will try later this evening. I asked for it. V expensive to buy.
My hubby went through loads of this. They used to dish it out in vast amounts in the radiotherapy department. He used it neat on his tongue. He then got actibalm for his lips.
We never considered buying anything as the radiotherapy department were amazing and told us that any side effects caused by their treatment would be treated by them.
He also used Caphosol very regularly.
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
I think we're going to try this tactic too with the GP. We only get the real basics at the hospital.
Pip
We have an NHS dentist however she insists on appointment before prescribing Duraphat therefore the prescription might be free but we end up paying £20 every time we want to see her.
i haven’t yet asked her for the Bioxtra as we’ll need to have an appointment and we only had one a month ago.
The mouthwash is a 250ml bottle so stop not going to last 5 minutes and the GP gave us 1. I’m going to request a bulk order and see what happens as they’ll soon get sick of my repeat prescription requests. We’ve also got the spray and then a thicker gel to use on a night.
The speech therapist just told us that Oralieve is also PH neutral but haven’t googled that yet.
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
Hi Tina
Hubby is on wk 5  and using E45 and Aloe Vera (and some Estee Lauder Night Repair as a treat). We slather Aloe Vera gel on each morning and he also has the drink - both were recommended by another ex 'patient'. Team is pleased with his skin. His neck is red but no further damage.
Good luck!
Hi Sharon
 he was getting on so well too
Pete's consultant suggested buying a humidifier (about £50 from Argos he said) and in the meantime, putting wet towels over radiators (good for the husband not for the house)!
Pip
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