Hi, my name is Narisa and I am new to this group. Hello everyone!
My husband was diagnosed with Squamous Cell Carcinoma in the base of his tongue and the vallecula in his throat on Jan 17th 2023. It is stage 3, T4 and HPV 16+
He is now in his final week of radiation treatment having done 2 rounds of Chemo (no surgery) in week 1 and week 4 using a drug called Cisplatin. He has been told by several members of the medical team to be prepared for the hardest week this week and to expect to be at it’s worst for up to two weeks post radiotherapy. I am beginning to understand why..
I have never seen him in so much pain before and I don’t know what to do so I thought I’d turn to the Macmillan support group in my hour of need because I know that the kind, friendly and supportive people on here have gone through this and might be able to offer me some advice to help ease his pain.
He has this week developed two very large white and red canker sores at the back of his mouth where his tonsils are and these press on the nerve endings in his ear, jaw and teeth causing him significant aches and pains throughout the day. It is especially bad in the mornings because his salivary glands no longer work and he wakes up several times a night with a bone dry moth and sore throat that cause the canker sores and ulcers to dry up become extremely tight and sensitive to pain and in desperate need of lubrication or some elasticity for the pain to ease down.
After previously taking just paracetamol and then co-codamol later and them upping the dosage futher but that no longer being sufficient enough to ease the pain, he was recently prescribed Buprenorphine 15 micrograms/hour 7 day transdermal patches for 2 days now as been incredibly disappointing because he is in more pain than he was before and these patches simply don’t work!! The doctors advised us when we were prescribed the patches that our options for pain management were running out and this would be the final option so we would have to make this work alongside any oral morphine we might have at 5ml / 10mg and liquid paracetamol.
I am using oral morph 5ml (5 times) and paracetamol (4 times) throughout day/night while we have the patch because it doesn’t seem to work but I just wondered if anyone else might be able to offer me some advise or alternative medication solutions so that we can speak to his doctor tomorrow and change his pain management plan because at present, it is clearly not working and he shouldn't have to endure this level of pain especially going in to the final week?
Thank you very much
You are welcome Narisa, i fully understand about the lack of saliva, let's hope the pain decreases with the patches as he will feel better and the saliva glands will gradually recover, i had one of mine removed so the others had to compensate they produce enough saliva during the day with the help of plenty of water, coffee, tea, etc, night time is not so good but im used to it now so i just make sure i have a bottle/glass of water by my bedside. I used to get shoulder pain that went to my ear and teeth as the nerves are linked to one another. Its good he is nil by mouth as it will/should help with his recovery, hang on in there you two as you will see signs of improvement, all the best.
Chris x
Its sometimes not easy but its worth it !
We managed to convince the doctor today to prescribe the Fentanyl patches so he starts that today and we will see how he gets on with that this week and he can always top up with oral Morphine 5ml and paracetamol, as needed throughout the day.
The vast majority of the pain that he is suffering is caused by these large canker sores that are pressing on nerve endings giving him unbearable ear ache, tooth ache and jaw ache every time he takes a siip of water or when his mouth dries up throughout the day and worse at night.
Hi Marisa.
In my experience background pain control wasn't enough. I took my oramorph and paracetamol by the clock whether the pain was bad or not. If I missed a dose it took more morphine to subdue it. You are better taking the analgesia in front of the pain.
I was taking either morphine or paracetamol every two hours, ticking it off a sheet pinned to my kitchen noticed board
You could try a water spray instead of sipping water. If your husband is taking enough fluid via feeding tube there is no real need to swallow much. A water spray doesn't wash away the little saliva that is present.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi again Narisa
What did help me after treatment was auricular acupuncture to help kickstart it.
Helped me too. I have a couple of posts about it on my blog linked below. One of the posts has a decent discussion about it in the comments
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
What type of water spray was that? Just an empty travel bottle spray filled with water or something else you were told about?
We've found an Auricular Accupuncturist and will start sessions as soon as my treatment finishes to help with the Salivar glands. How many times a week did you visit your Accupuncturist and for how long, was it months, years?
A simple hand spray does the trick
I used to go to my practitioner every two weeks for eight sessions then monthly till I felt it wasn't doing anything more. I quite enjoyed the sessions and the chat.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
