Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Dry mouth, anyone used a nebuliser?

LindaWT
Posted by

I've not tried BioXtra so I don't know how effective it is Sharon.  My Biotene and all my dental products were prescribed by the hospital dentist and hygienist.  I'm sure the head and neck clinic at the hospital would have prescribed them too.  As Radioactive Raz suggests it may be worth checking out your dentist if you don't get any joy with your GP or maybe Ken's hospital team as he's seeing them this month.  

Good luck with all the strategies and keep dry!

Linda x

RadioactiveRaz
Posted by

Hi Sharon quick note chewing gum sugar free look for xylitol as main ingredient as opposed to sorbitol I use Wrigleys blue they have brought out one called extra minis I onky find them in b and m they are half’s the size of normal and just fit fine A tip I picked up from @Beesuit is chew then park it in between your teeth and cheek .Re water ive been  on bottles water now nearly 17 month I can’t stand smell or taste if tap water maybe Ken  is the same , for a time we even became a 2 kettle family now tap water in tea or coffee ps only try him with decaf as ordinary dries out as well,  

ps Tesco do a 5 litre bottle for £1.20 water 

biotene is p h 6.5 and bioxtra is p h neutral ,so biotene should be ok for short term use I used it to start with it was my dentist who put me in the bioxtra .Yes agree some g p s do make it difficult not saying North south divide know you like me are North seems like the people I know south if Watford get their g p s do give them more or less what they ask for  Not starting a war by the way just an observation ,when mine refused the feeds that hospital dieticians said I needed I had to get clinical commission group involved not what you need week 5 into treatment ! 

hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

RadioactiveRaz
Posted by

Hi Linda just shows how different areas treat us I was using biotene happily then my dentist changed it to bioxtra am happy with either oh the joys of oral cancers !!! Like w pe often say we are all the same but different even the n h s treat us differently .

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

Beesuit
Posted by

Pretty nasty wind here turning the rain horizontal. 
Ive spent the morning making and waxing a hundred beehive frames ready for this season. 
Keep safe everybody. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Mrs Wozza
Posted by

Yes keep up the good work, we love your honey

Val x

Hellebore1
Posted by

Hi Sharon re: GP deciding on what they’ll prescribe and what they won’t - seems appalling that a cancer patient is potentially being refused a product universally recognised as helpful for the serious condition of dry mouth. I would ask your team - H&N nurse or consultant to write to your GP straight away and request that your husband is prescribed the biotene or BioXtra. No compromise.

Regarding mineral water - let him use it for now if it helps, but fizzy mineral water is pretty acidic and post-treatment when he has reduced saliva long term, it is best to avoid it if he wants to look after his teeth. Short term - fine.

I fully recommend trying chewing gum  - I couldn’t survive without mine, and “parking it” on teeth is great and means I don’t have to chew all the time. Really useful if he gets back to regular exercise too.

Hilary 

Beesuit
Posted by

Thank you Val. I’m bee mad! That and the family were the only things that kept me sane at the beginning. The bees were the first ones I told about the cancer.

I agree about the chewing gum. Lots of brands are loaded with aspartame too. I buy peppersmith in industrial quantities. 
By the way, do you have an alternative to SLS flavour free fluoride OraNurse? There isn’t a tube to be found anywhere online and I’m down to my last one. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Mrs Wozza
Posted by

Hazel,

Talking about north south divide, l am in the Midlands and l have had trouble getting most things from my GP. The hospital sent them electronic emails but l do wonder if anyone reads them in the end we took paper copies from dietician and managed to get Fortisips.  Had problems getting liquid paracetamol  but now l think l've won the battle. It took me going into reception frightening them with scars on face, round neck and a trachy scar demanding l needed this prescription.  It worked l now have loads now but it shouldn't be like this. It has been getting through the Receptionists that has been my problem. The other week the doctor asked to see me for a drug renewal appointment. The Receptionist told me it would be the following week so l demanded the main Doctor's phone number telling them l had a 10 hour operation for cancer 4 weeks previously, the doctor requested to see me and l was having to wait 7 days!!!. I managed to get an appointment two days later. I feel as though l have to fight for everything.

Val x

Beesuit
Posted by

Crikey! I got more or less what I wanted. I still have Fortisips on repeat if I want it. If you need caphasol, Val, later on and you can’t get it I have two unopened tubes you can have. 
( you can get them without a script but very expensive) 

It’s a weeks wait for GP appointment but if you ring on the dot of 8.30am you’ll be seen that day. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Hellebore1
Posted by

Beesuit - Sorry I don’t have an alternative to Oranurse. I only used it for about 2 months when mouth really sore  and haven’t looked for it since. You could ask your Dentist as they may order from different dental companies and be able to get it for you, or ask the Hospital lot - Restorative Dental if you have them. 

Mrs Wozza - I’ve sorry youve had such trouble getting some drugs - it’s unacceptable. Can you be bothered to let your MP know at some point? -  and defo make sure your hospital team is aware that patients are having difficulty getting essential medication in your area.

Hilary

Mrs Wozza
Posted by

Dani,

I had a bone taken out of my lower leg to reconstruct my jaw,  tissue and skin taken from my leg to make a flap in my mouth and skin graft used to cover the aforesaid area. When l left hospital 12 days after the operation district nurses refused to come out to dress my leg because I could walk. Now l had to walk (waddle) and go up and down stairs to get out of hospital. I phoned my doctor's to get an appointment to have it dressed by the nurse only to be told they had no appointments for a week and l would have to go to the walk in centre. Luckily for me a doctor at the hospital arranged for me to go back to the hospital to have it dressed. If you aren't tickled stomach l will send you a photo of my leg and what it was like. It will still need months of dressings twice a week. I knew l had something wrong with my jaw last June but my dentist dismissed it, then an appointment to dental hospital went missing. Desperately phoned Doctor's for help only to be told l had to go to the dentist. Eventually got an appointment at dental hospital to be told it didn't look good and the cancer had spread so much l had to have 3/4 of my jaw reconstructed. 

I think l can now understand why people turn up at A & E. Last year with my mouth issue l really wish l had gone to A & E then l wouldn't have gone through such extensive life changing surgery. 

Val x

RadioactiveRaz
Posted by

Hi Val welcome to the club my dieticians also sent electronically to g p but remarkably they never got them , when I took paper ones or more precise when John took paper one in they said I had to wait 3  days as was treated like a repeat prescription!!! This was for pain killers it was a Friday so was 5 days in total they left me I only had paracetamol shu h I couldn’t swallow John ground them up and put through feeding tube Did contact m p umm still waiting on that one 19 month later !

like I said re Ensures had to get CCG involved 

but now surgery slightly better has I can order online my Ensure script is still there but I onky get what I may need in a month off them as occasionally I have bad food days so always make sure I have 8 bottles in.

good luck keep in touch h Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

Beesuit
Posted by

Val. I know your back story and I am so angry for you. It’s an absolute disgrace and I’m hoping you’ll get some redress when you feel better. 
Quite a few people have mentioned that their leg donor site caused them considerably more discomfort than their jaw. I’ve no idea why that is but it’s not uncommon so there is no excuse for minimising  it. 
I really wish you a speedy recovery. I know Vitamin C and Vitamin E are great support for healing. 1000mg and 1000IU per day. You might try that but beware of antioxidants during Chemoradiotherapy. 
Dani

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

Mrs Wozza
Posted by

Hi Hazel,

I can order my Fortisips online now but only prescribed 2 per day. I have been eating very well so only been having one lunch time. When l start treatment this may change. I really enjoy them with cold milk.

How was milk during radiotherapy? I enjoy drinking milk and suddenly thought nobody has mentioned it during treatment.

I think it's so wrong how we've had to fight to get painkillers. I must admit though l've got plenty now. I think l frightened them showing all my scars where normally l cover them up.

Val x

RadioactiveRaz
Posted by

Hi Val unfortunately for me milk became a no no as I found it just increased the mucus which was horrific some days ,but as we say in here we are all different and hopefully you will be ok. What the dietician do say after treatment fortify full fat milk with extra cream so if you can and you can drink it all well and good .niw I am ok with semi skimmed in cereals but I have never been a big milk fan .

During treatment and recovery you may need to ask them to increase your script as I wasn’t told 2500 calories a day was what they wanted me to eat including 85gram  of protein which equates to 8 ensures a day when I had feeding tube most I could take in one session was 500 cal then tummy was full so feeding and hospital visits, mouth cleaning  and naps it was like Groundhog Day stop one circuit and re start !!!

hope this makes sense Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer