HPV 16 cancer in lymph nodes 1 &2 awaiting treatment- dont know what to expect.

Hi JDCC 

Treatment is a real challenge but I managed at  68 and five years later I’m living a great life cancer free

We are all different. Nobody gets all the side effects we have to sign for. Some folk escape really lightly and some never use their feeding tube and manage to eat throughout. 
Click on Mark’s name here. He has a good account in his profile 

 MarkEL 

Stay with us there’s so much lived in experience here and there’s always somebody around to talk to. 
Lastly. Remember HPV driven throat cancer is curable. 

If you have a look at my blog linked below there’s an overview of radiotherapy at least. 

Hi JDCC, I take it you'll be having 6xchemo and 30xradiotherapy.. you usually have chemo at the start of the week followed by radio straight after..its a long day so take some snacks/something to occupy yourself.. everyone is different but things start to get 'uncomfortable' around week 3/4, so make sure you've got your PEG/RIG in place.. if you don't need it, fine.. but it's there if you do. keep your team updated with how you feel, and keep on top of your pain meds.. oh, and don't forget to ask anything, or even have a bitch and moan.. we know the score and we're all here to help you through this.

Hi JDCC

I finished Chemoradio in June 2023 for tonsil cancer HPV16+...it is a tough gig...side effects can be troublesome...do you have a feeding tube?

Fire away with any question...we have all been on/are on the road to recovery...no question will go unanswered.

Peter

I am 72 and just finished treatment and will hopefully get the all clear today from my oncologist. Everyone is different and I had a PEG fitted and that was my life saver. The first two weeks of chemotherapy and radiotherapy were ok but then it does get a bit rough. It’s a long road but you can do it, I had 5 lots of Chemotherapy and 30 of Radiotherapy and the nurse are brilliant and will help you through this. 
This is a good group and has definitely helped me through this. 
regards

Dave 

Hi Dave B5246  This is the stage when you have lots of sticky mucous in your throat which can make you gag. I must admit that just after finishing I didn't bother trying to  swallow at all, just did my exercises and spat a lot. It was six weeks before my NG tube came out and even then it was an accident so I had to eat. 

Hi JDCC, it's not easy, however it is doable, with very high rates of cure. Keep your team updated with any side affects you have, (don't suffer in silence) they will give you something for them. There are many of us on here who had the same, and are here to tell the tale, and help others through their treatment. Stick with us, any questions just ask.

Ray.

Hi Dave, use your PEG for water, swallowing will get better with time. My gag reflex was terrible, I used to gag just trying to speak, brushing my teeth was impossible, even with a baby's toothbrush. It will improve over time and get back to normal, you still have a lot of healing to do.

Ray. 

if you drop your chin down towards your chest and turn your head towards your treatment side that may help.. you can give it a go.. congratulations on getting through the treatment.

Hi JDCC 

So sorry to hear about your diagnosis but as the others have said we are all  unique and have different treatment ( amounts of chemo / amounts of raiotherapy grays ) some peoples bodies cope better than others . For the majority it’s a tough and challanging journey but with very high cure rates over 95% .

Many of us consider our feeding tubes to have been a lifesaver ( I still have mine which is unusual). Top tips are stay off Dr Google it’s not helpful , if you have questions /worries ask your team /mcmillan or this lovely group who have a wealth of personal experience and knowledge.

Make friends with your CNS mine still supports me newly 12 mths after treatment. They can help you  with transport to and from daily apts.contact your Maggies centre if you have one .Tell your team of any pain /symptoms asap so they can help you control them.

Ask friends/family to support you throughout and beyond treatment ( we all need support)x

Try to keep the anxious brain busy I watched endless tv and netflix shows.

Do all exercises 2-4 times daily

You can listen to your favourite radio station or make your own playlist on your mobile  to take in each radiotherapy session this can be very helpful.

Remeber no matter how tough times get brighter days lie ahead of you x

Debbie

T4N2MO HPV+

Thanks Debbie- all the messages ive recieved have been positive! But 12 months after treatment why are you still using a PEG ( i dont actually know what it is?