First post - chemo radiation meeting tomorrow

Hi Jason I was 61 when diagnosed now 6 years later I’m living a good life. Just back from Spain where I cycled 200 km and walked 90 km. it all takes time but the majority of us are living a fab life. If I can do it anyone can. Remember our cancer are curable treatments tough but it works. 
any questions just ask we’re all happy to help 

hugs Hazel 

Hi Jason 

T2N1M0 Tonsil cancer HPV16+

Finished chemoradio June 2023, it is a tough gig, but well worth it, lost my taste and appetite, also lost 16kg, which I have kept off, now eating well, taste still improving, been abroad a few times, healthy BMI.

Take care and best of luck 

Peter 

Hi Peter,

I’m pretty lean, the last thing I need is to lose more weight!

This is one of my many concerns

Not everyone is unable to eat anything after chemoradio, some do get off relatively lightly, PEG feeding definitely helps to keep the weight steady when eating becomes difficult.

Peter 

Hi Jason Hence the peg it’s there for a reason to use it. My ng tube was my lifesaver. I’m only 5 foot I lost around 10 lb mostly after treatment. During treatment pre Covid we were struck monitored by our dieticians.  They don’t want you to loose weight as the mask needs to be snug throughout treatment. Whilst you can still eat think about adding extra calories to foods double cream to soups , pasta etc  no low fat things.i ate a double chocolate  magnum a day while I could that was my treat to myself.

Hazel 

Umvert said:

All very daunting, and my main concerns are over the long term potential side effects.

Hi Jason. There are a few but managing them becomes routine. Nobody gets all of them. For me, bear in mind I didn’t have chemotherapy, My salivary glands bar one were hammered so I have less saliva than normal. This impacts mouth pH and hygiene predisposing me to dental caries so I brush teeth three times daily with a prescription high fluoride toothpaste. The only problem I have is at night when I tend to mouth breathe so I use a little tablet called a xylimelt which sticks to my gum and keeps my mouth moist. Sadly we have to pay for those ourselves. 
Radiotherapy causes fibrosis ( scarring) which can be progressive. We get exercises for jaw and swallowing and I still do them and will forever. I have no significant fibrosis at all except a little neck stiffness. A particular manifestation of fibrosis is less than optimal blood supply to the jaw, particularly that bit in the line of fire. This can severely hinder healing if you have invasive dental interference so this MUST be done at a dental hospital, NEVER your own dentist 

I did get a little ear damage on the one side where the RT was concentrated  it’s caused high end hearing loss  it doesn’t bother me but annoys the heck out of my husband  

I have to keep an eye on my thyroid hormone levels but so far so good

I take statins to keep my blood cholesterol level low. Radiation can affect your carotid arteries.  

That’s all I can think of. 
Its all manageable and I hardly notice any of it 

Umvert said:

I’m pretty lean, the last thing I need is to lose more weight!

This is one of my many concerns

Your team won’t let you. It delays healing. Your dieticians will keep an eagle eye out. It’s what the PEG is for. Just do as they tell you and you’ll be ok. Remember, you don’t have to fight the cancer , that’s the team’s job. They are good at it and have done it hundreds of times. They know the score. You have to fight to stay sane and having the odd strop, meltdown and weep is all part of that.