Hi, I had cancer in my Left Tonsil and base of tongue with one lymph node, Diagnosed 23rd December 2020, I started my Radiotherapy 5 days a week and 1 day a week chemotherapy Treatment in January 2021 for 6 weeks, last day of threatment on the 26th February 2021, after the treatment and my 3 month PETScan I was told I am clear of cancer, Its now been 6 months .......... what information can I share with you from my own experience ?

regards 

Dave

Hi Dave,

I have simular HPV+ right side tonsil base odf tongue T2 N1 start treatment Easter Mon sae as yours

I was contacted yesterday about a PEG tube which I'm not shall about having at the moment.

How did you cope with eating, working, side effects etc?

bircy999

Hello,

I'm sorry to read to need to start treatment, although you've likely been told repeatedly that it's very curable. 
I've gone through treatment for the same diagnosis as you - HPV base of tongue spread to lymph nodes. I'm now five months post. 
Everyone copes differently, especially as everyone has different levels of symptoms.  I didn't get symptoms for the first few weeks and then I just started counting down the days. One tip I had was to always know what your next meal will be, if you're tired and sore you don't want to have go for a shop. Keep lots of creamy soup, milk, smoothie ingredients, custard, porridge etc around.  Really ice cold water has a kind of numbing effect. Take (the correct) meds before you need them, why be sore when don't need to be. Sleep a lot. Take hugs and cups of tea where you can get them!

Best wishes for an easy ride, it'll be quicker than you think xx

Hi Erica,

thank you for your reply and so glad you are on the road to recovery. Did you have a peg tube fitted before treatment or was this not offered to you?

birchy999x

I didn't no, but I'm part of a thread called 'Rare Tongue Cancer' and Peter just had his removed after treatment. It's a really friendly thread, and I know Peter would answer any questions.

www.cancerresearchuk.org/.../rare-tongue-cancer

Hi Bircy,

               I have tried to reply a couple of times, once my post didn't get posted, and the other after writing a nice long post, I was typing and somehow hit a the screen on my phone in a place where it sent it to another page very frustrating

So I am now replying in paragraphs

I did have a PEG ( stomach feeding tube ) fitted, it was recommended to me by my consultant due to the hight level of radiotherapy and chemotherapy I received, I would of not been able to managed without it, by the second week I could only managed to drink water, my throat was to sore and painful for any type of food, and my taste changed and didn't like the taste of anything, I used my PEG all the time. But I kept regular routine of jaw and swallowing exercises, which means I never had any problems with swallowing and eating once I recovered from the treatment.

I have a high pain threshold and also ate the hottest chilli sauces in my normal diet pre-treatment and after post treatment and I started eating normal food again I needed stronger flavours, so I found I could eat mustard and started on milder chilli sauces until now I'm back to the hottest chilli sauces again, I'm now w post 1 year and 1.5 months after treatment. During treatment I managed on dissolvable paracetamol, but at times I came close to using stronger pain killers which were prescribed in case I need them.

My skin became blistered after my last day of treatment, I had managed to use E45 cream thought all of the treatment, I was prescribed some other ointment to apply on my blisters which help them repair quickly. Just make sure you don't put clothes on them because it will irritate them.

I couldn't sleep, because I coughed up flem regularly, so relied on cap napping day and night, and went to the toilet a lot due to drinking lots of water to keep hydrated and flush your body out. I couldn't work due to being tired and felt weaker, plus had a 4 hour round trip each day, radiotherapy 5 days a week for 6 weeks with day of chemotherapy a week.

Hi Bircy, 

             I am back to work, weight training and running regularly, during the treatmeant I lost between 1.5 to 2 stones, but I'm now back to 12 stone, ( I managed to maintain good calory intake using my PEG during treatment ) like I say its now 1 year and 1.5 months post treatment, and my eating has been back to normal for over 8 months regaining taste after a couple of months post treatment, syliva is now pratically normal sometimes get a dry thoat if i sleep with my mouth open snoring on my back, and certain dry food will need to sip a drink when eating it. anymore information about my treament please ask and I will answer your questions using my own experience.

all the very best

Dave

Hi Bircy, 

             I am back to work, weight training and running regularly, during the treatmeant I lost between 1.5 to 2 stones, but I'm now back to 12 stone, ( I managed to maintain good calory intake using my PEG during treatment ) like I say its now 1 year and 1.5 months post treatment, and my eating has been back to normal for over 8 months regaining taste after a couple of months post treatment, syliva is now pratically normal sometimes get a dry thoat if i sleep with my mouth open snoring on my back, and certain dry food will need to sip a drink when eating it. anymore information about my treament please ask and I will answer your questions using my own experience.

all the very best

Dave