Base of Tongue HPV+ Cancer

Hi everyone.

I am new to the forum.

My husband has recently been diagnosed with HPV + BOT SCC which has spread to the L2 lymph nodes, thankfully it has not spread anywhere else. 

He starts his treatment- 6 weeks of radiotheraphy and 6 sessions of chemotherapy (cisplatin) on 6th September 2021. 

We have been told that this is a very difficult and painful  journey.  

Looking for any advice please. 

Thanks x

  • 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