SCC Tonsil Cancer - post Treatment r

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Hi new to this group and hope to get advice. My partner is 4 weeks post treatment for SCC tonsil cancer. He had 2 cisplatin & 30 radiotherapy sessions. Really thought the side effects had peaked a couple of weeks ago but he is still in so much pain, terrible earache and still difficulty swallowing. The throat doesn't seem to be healing the side of the tumour.  He hasn't eaten solid food for 7 weeks now and has just been on Altrapen & Ensure compact shakes and is really getting down about not making any progress.  Has anyone else experienced this, Is this normal at this stage or is his expecting things to get better too soon.  Any advice or your own experiences would be gratefully received. Thank you.

  • Sez - hey, nice to have you here. So, I’m now 52 - was 46 when diagnosed with Tonsil Cancer. Tonsils out then 2 big hits of Cisplatin followed by x6 mini doses at the beginning of every week for 6 weeks of Radio.

    Radiotherapy is like filling a bottle, at the end of your cycle your probably won’t necessarily feel the full potency of it until 2weeks later. This is not the same for everyone but it can have this effect - it did on me. Does hubby have a PEG or RIG fitted? Radio smashed my throat inside and out and I relied on my PEG as I could not even swallow water.

    Recovery is super-slow mainly because Radio in this area is really aggressive and it’s a part of the body that is constantly wet, moist and harbouring loads of bacteria to cause issues. I’d say to your hubby to go with it and not to beat himself up with the lack of progress, it might take weeks. If eating/swallowing gets to he a real issues (and he hasn’t had a PEG/RIG) fitted that might be a consideration. I was 97kg (6ft tall) before I started treatment and dropped to 66kg. A PEG/RIG becomes your friend (although I hated having it) but it kept me alive!

    I’ve got a bunch of stories to share if you need any help, support or guidance but you’ll find lots of people on here with similar experiences and will be able to offer you loads of help…

    Best wishes

    Reevesy

    Reevsey
  • Hi Sez
    T2N1M0 tonsil cancer HPV16+. Finished treatment June 2023
    Treatment is tough... middle of August before things started improving....PEG feeding tube removal late September....use your pain meds....do not suffer in silence.. . Started on full meals in October... taste was still pretty rubbish.... healthy BMI was not easy to maintain .... things will improve....I am posting this from the Canary Islands.....and enjoying my food.

    Take care and best of luck

    Peter

  • Hi thank you for your reply - no tube fitted he was encouraged to try and go without it. He has lost 16kg and was managing 6 ensure milkshakes a day but last couple of days dropped to four.  Seeing oncologist tomorrow so hopefully they will help. Was recommended to this group as helpful to hear from people who have experienced this horrible treatment first hand and hoping seeing posts like this will bring some encouragement to him. I think as he has a couple of good days was thinking he was on the road to recovery butt I guess we just have to take each day as it comes. Thank you 

  • Thank you for your reply - love the Canary Islands! 

  • Hi and welcome from me.

    I am now 10 weeks post treatment.  We are all different and how we react and recover will be different. 

    I had 6 weeks of chemoradiation bilaterally, with a higher dose on the side where the tumour was.

    I am still on strong painkillers as well as paracetamol mainly for the ulcers that are still in my mouth, throat and tongue on the side where they mainly zapped me.  The lesser side healed quite quickly.  I can eat soft foods, but supplement with Fortisips to keep the calories up as there is no way I can get enough food down with the pain I have.

    Up until 3 1/2 weeks post treatment I was pump fed despite managing to eat right the way until the last day of treatment.  Since then I have experimented and introduced new things to find out how far I can push myself.  The mantra of "little and often" is a good one regarding food at this stage.

    He is making progress, I can assure you of that.  Unfortunately much of our progress is 2 steps forward and one frustrating step back!

    Earache is standard for this.  Although there is probably nothing wrong with his ear all the nerves in that area are intertwined and you often get earache as a result.  It sucks!!

    I can actually open my mouth enough now to see the damage the treatment has caused.  Each day those areas turn just marginally more towards their natural pink from the horrible yellow/white colour of the damaged tissues.  Unfortunately only patience and time will get him to his new place.

    Peter
    See my profile for more details of my convoluted journey
  • Hi, I'm afraid what your husband is experiencing is quite the norm... Treatment and recovery is slow (and painful). There's just no way around it given it's our throats that have taken the beating. For me, recovery was slow and not always steady (i.e. you'd think you were turning a corner, only to experience a set back). 

  • 100% - everyone is different with their recovery/return to ‘normal’ (where applicable) but as described, the treatment journey is pretty rough and has a massive emotional effect on everyone involved too.

    I was at times, a horrible human being to be around but it was because I was unwell and rammed full of potions and painkillers. ‘Us blokes’ are notoriously rubbish at sharing and being open, honest and frank about stuff in general let alone when enduring something like this! Do not underestimate the effect this will have (is having) on you - make sure you don’t take the brunt of this situation and surround yourself with people you can bounce off. Macmillan in your local healthcare facility (as well as online) can provide a wealth of support to help you…

    Take care.

    Reevsey
  • Sorry, hit return to soon... All I can advise is that he puts no pressure on himself to recover faster or see more progress. Just go day to day and do what you can do. I was pretty lucky with eating and drinking but I do remember days when managing a soft boiled egg, mashed to pulp was an absolute triumph. Take the wins where you can. Better days are coming (honest) but it does take a while. I am 7 months post treatment and pretty much back to eating normally (with some care). Just back from a my first trip away (Mallorca) and re-joining my running club this week (back to beginners!). 

  • Thank you for replying it's encouraging to hear everyone's stories and like you say everyone is different and no matter how small & slow  progress is being made every day.

  • Thanks you - he was worried it was just him, we have been given very little info on recovery other than being told the side effect would peak 7-10 days following treatment. So good to hear from real experiences. Hope your recovery is going well.