Post treatment side effects

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Hello all

Thank you for your continued help on here. I'm never sure whether I'm posting in the right place on here so apologies. This post is about my mother who is 69 years old and 10 weeks ago completed 6 weeks of radiotherapy for HPV positive cancer in her left tonsil and back of toungue T4N0M0. She's had a real rough ride with pain since the start and had to be taken off chemo after 2 infusions as she was so sick. She managed to escape having any feeding tube but is now post treatment not doing too good and she has her CT scan on 18th February to see if the treatment has worked. 

My reason for posting today is to ask for any kind and welcomed advice and reassurance that i can pass on to her. She feels so down because the dry mouth seems to get worse daily and she's tried some of the supplements mentioned on here but they don't seem to help her. My question on this is does the dry mouth improve in time? 

She also has a pain in her throat on the treated side that doesn't seem to go away. The doctors couldn't feel any lumps and thinks it could just be side effects of radiation or her odema but does anyone else have or had experience of having a pain in the throat some 10 weeks post treatment?

My poor mum is worried constantly and is sick and nauseous with no appetite. She also is facing having to have teeth extracted and dentures fitted and is so worried about the future and how she will eat. 

Her mental health is in tatters with all this. If anyone can send some encouragement and advice it would be so appreciated. 

Thank you 

Moz xxx

  • Did she get anti scones meds

    im due to start same treatment soon I’m 66

  • I won’t have any teeth either but mine are coming out prior to treatment as I was told they did that

  • Hi Moz

    Age 68 at diagnosis

    Sounds like par for the course with side effects....pain does lessen over time ...I finished chemoradio in early June 2023 it was mid September 2023 before any real improvement ....make sure Mum is getting plenty of pain relief meds....Difflam spray helped hit the right areas...I still get the odd niggle now.

    3 molars extracted.....appetite and taste did go....but slowly returned

    Dry mouth does persist, little water spray bottles are available from Tesco at £1...they can help...I carry a water bottle around for relief...also one on my bedside table.

    Mental and physical health also take a lot of punishment for patients (and carers) Macmillan have support teams for this issue.

    Take care...keep the forum updated with Mum's progress

    Peter

  • Hi  

    Your mum is still very early in her recovery. Having struggled without a feeding tube must have left her physically and mentally exhausted. I know that if I had had to fight to eat I would be in pieces

    Pain relief is key. What is she taking for pain relief? I was on long lasting  morphine twice a day and with oromorph and paracetamol alternating every two hours.

    A pocket water spray is worth thinking about ...better than washing away any saliva she does have with sips of water. I used Bioxtra mouthwash too which is very soothing. 

    It will get better but slowly. What saliva substitutes has she tried? Some are better than others.

    If you email Chris Chris at The Swallows cancer charity you can get a mouth support pack ordered. They are free. That will have a few things she can try Chris@theswallows.org.uk

    I'm afraid the appetite thing is all pervasive. I couldn't be b othered to eat for six months and there only thing that pushed me along was having to cook for my husband. I could eat but just wasn't interested. I ate to live and recover 

    Do you go with her to her appointments? It would be useful to see the restorative dentist together.

    It's just time

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Moz

    I was troubled with sickness and nausea for a time, anti-emetics helped but they also had side effects, I tried cutting down on them with disastrous results....had to keep sick bowls handy ...ask your CNS for advice on this issue....my CNS was extremely helpful with anti-emetic advice.

    Peter

  • Hi Moz

    ''Her mental health is in tatters with all this'' 

    Cancer related post traumatic stress is pretty common, many on here would have suffered/still suffer from it to some degree, including myself, some sought counselling...maybe worth considering for your Mum?

    Peter

  • Her mental health is in tatters with all this. If anyone can send some encouragement and advice it would be so appreciated. 

    Macmillan offer free counselling through BUPA. Might this help? 

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Peter thank you for your very valuable advice. 

    Great to talk to people that truly understand. 

    Mum definitely has ptsd type symptoms and has just started counselling. I pray that helps.

    Thank you for your advice re nausea and also dry mouth. Could I ask you about that some more? Did it ever improve for you just a little or stay the same?

    Moz

  • Thank you so much. This is so helpful all of it. I've emailed Chris and will accompany her to the dentist tomorrow