Head and neck treatment

Hi Dave

Try not to dwell too much on what you were told. We are always given a worst case scenario and nobody gets all the side effects.
This is a generalisation but there is a commonality 

4 week's mouth and throat really painful. Too painful to swallow. Most of us are tube fed. I was fed by nasogastric tube for 8 weeks. 
The 2/3 weeks after treatment end is the worst. I slept most of the time 

We tend to feel better at 6 weeks and 12 weeks turn a real corner. I could eat soft food by then. 
I wasn’t happy with eating till 6 months though taste was still subdued. Appetite nil so ate to live 

By 1 year I was more my old self. 
Saliva started improving after the sticky mucous went. 

You have to look after your teeth because saliva production is never enough to protect your teeth but it’s acceptable. 
Are you having g chemotherapy? That’s the treatment that can cause hearing loss so you need to tell your team if you are getting tinnitus. The regime can be changed. 
Having said that I do have high end hearing loss as my cochlea was hit by RT. 

Hi.

Thank you for that info, it really helps from someone who has gone through it. 

Yes I'm having chemo as well

Aston63 said:

Yes I'm having chemo as well

That will likely be Cisplatin which is ototoxic. It can be changed to Carboplatin which is less so

I'm very well and many years down the line. Recovery is slow at first but most of us come out relatively unscathed. 

Hi Dave

Age 68 at diagnosis

T2N1M0 Tonsil cancer HPV16+.....finished Chemoradio in June 2023

The treatment is harsh no other way of putting it, though some tolerate the ChemoRadioTherapy better than others.... my taste and appetite disappeared during weeks 2-3 of treatment, mouth and throat ulcers were problematic but well controlled by pain meds....do not suffer in silence ask for whatever meds you need and get a good supply including laxatives.....PEG feeding tube was a life saver....

Sept 2023 brought about a great deal of improvement, PEG taken out, eating better....October 2023 playing sport....swimming....November 2023 went to Tenerife....taste and appetite now about 90%....chicken Tikka for dinner tonight followed by Christmas cake for pud...there is light at the end of the tunnel.

Peter

Hi yes Cisplatin , so did you cope with feed tube ok and what type of foods did you have? 

How did you cope with dry mouth and sore throat and choking ?

Sorry for all the questions. I really appreciate all your help x

Dave

Hi  welcome to

our small group. I too had lymph node involvement and primary in tonsil. I had 35 radiotherapy and 2 of a 3 planned chemo cisplatin. I’m 6.5 years post treatment and living a good life.
Treatments hard I was 61 when diagnosed but I did it so can you. .

my 3 rd chemo was cancelled after discussing with oncologist. It’s not unusual for us not to have all chemo the chemo makes our cancers more receptive to radiotherapy. It’s the radiotherapy that’s the main course of treatment 

we are told all the possible side effects but it’s rare to get all of them. I’m left with dry mouth at night and no tolerance to spicy food small price to pay. 
If offered a feeding tube I advise to take it my ng tube was fitted end if week 3 it was my lifesaver enabled me to make a good recovery. 
my blog below might help

Any questions just ask we’re a friendly bunch. 
hazel x

Aston63 said:

Hi yes Cisplatin , so did you cope with feed tube ok and what type of foods did you have? 

How did you cope with dry mouth and sore throat and choking ?

Feeding tube didn’t bother me. It was ok

Feed was Fortisips provided by hospital. I drip fed overnight by pump. Left the day free to stay human and sane unencumbered by repeated feeding at intervals 

Dry mouth. A pocket water spray is useful. There is a whole range  of mouthwashes  and saliva substitutes to try. Your speech and language team will point you in the right direction and likely others here will tell you what they used. 
Sore throat. Morphine. 
Choking. I didn’t choke. No problems there. 
Take it day by day. You’ll be fine. 

Thank you Peter for that info. Really helps

Thank you so much for advice and help, all this info is really helping before treatment starts. I can't thank you enough , 

I don't want to bombard you with questions but if there's anything else you might think will help me i will appreciate it

Take care , Dave 

Same here

im end March to start

i need teeth out

i was told radiation is main treatment therefore I’m opting out of chemo