New Here … Head/Neck inner ear tumor

Hi Alexc,

Of course stay in contact no problem.

Regards,

Oldbob62

Hello Snow White,

while replying to someone else I noticed I didn’t answer all your questions.

Re. Swallow and eating I didn’t practice but I saw a dietician at the hospital who gave me some tips on what to eat and how to prevent food from spilling out of my mouth. I have to use a straw for drinking. Re. Pain I didn’t really have a lot of pain I think due to the nerve damage so wasn’t really an issue. I did take morphine (Oramorph) for a few weeks but I didn’t like the side effects it caused (constipation!!). However I loved the way morphine made me feel! I also was prescribed Pregablin which I still take today but more because I think I’m addicted to it rather than pain relief! Also if I stop taking it I start to feel really anxious.

Hi Oldbob62

Can I ask what sort of foods your were asked to eat while having the treatment, high proteins etc.

After your 2 years of treatment were up, how often do you have check ups is it 3 or 6 monthly. 

Thank you.

Thank you Oldbob. Unfortunately we had the news this week that immunotherapy hasn’t worked and the cancer has spread. Treatment has been stopped. I have contacted The Royal Marsden to follow up on a previous referral for any trials, but it’s looking rather scary. Thank you for replying. 

Hello Snow White,

I’m very sorry to read this. I hope you are able to get signed up for trials. 
Thinking of you and wishing for a positive outcome.

When I was in hospital I was being fed, basically porridge / gruel through the feeding tube. I was advised simply to eat as much as possibly when I went home to maintain my weight which had dropped from 88kg to 60 kg.

On discharge I was told I’d have MRI scans every year. In practice it has been more frequently, about every 3 months and CT scans too. This is because I’ve contracted various infections related to bone damage in my face caused by radiotherapy.. I was worried it was the return of cancer but been assured that it isn’t. Last scan was two weeks ago but not seeing my oncologist until August 7th because I’m on holiday (again) and I’m not worried about the results as I feel fine and my oncologist told me they go as much on how i say I’m feeling as the scan results! Apparently the scan results are difficult to interpret because the anatomical structure of my face is such a mess now.