Help...excruciating pain 4 weeks after RT

Hi Tigerlily

Not easy..... mouth pain is pretty intense, pain meds should control it though, I was on slow release morphine twice a day also Oramorph as needed, Difflam also helped...if your pain meds are not doing their job tell your CNS/oncology team ASAP...do not suffer in silence...

Peter

How much mst were you on? I'm on 30mg morning then same at night.

I've told CNS they adv ensure I'm taking Paracetamol 4 times a day & oramorph which I am. I do take difflam but it burns even after diluting. Calphasol I can't take anymore burns too much

10 mg slow release morphine in he morning...same at night.... 

On medical advice ....Oramorph 10-20 mls  as needed...sometimes 5 x daily at the height of pain....+ occasional top up if pain was bad

but speak to or email CNS before taking extra meds.

Peter

Ok thanks very much. At 4 weeks post RT didn't think would be in peak of pain thought by now would be easing. Do u remember when yours did? Thanks Claire 

MST and oramorph plus paracetamol for me. Tigerlily1983 are you trying to take food orally? 

Only the ensures I'm in too much pain to eat anything. I mean the ensures sting but I drink water after each swallow. I'm off the feeding tube

Just thought morphine would ease my pain, I'm going out of my mind. It only eases slightly if i don't drink, talk or open my mouth brush my teeth mouthwash etc. 

Hi Claire

Chemoradio finished in June 2023...mid-August brought real relief...

Then I had a Hernia op early September...intubation damaged my throat and pain kicked off for another.3 weeks...such is our lot....

But things do get better...I went to Tenerife in October with my wife...had a great time....no pain

Take care 

Peter

Good evening Tigerlily1983, when i was in a lot of pain i was prescribed pain relief patches plus oxycodone in liquid form, the pain patches were only for a short term but did do the job. Please do not suffer in pain and contact one of your team or your G.P. Wishing you all the best, take care.

                                                                    Chris x

Hi Tigerlily

Throat pain is following certain pattern, I guess it is due to speed of our mucous membrane regeneration. After my surgery I was not able to eat or even drink pure water normally. My surgeon told me that it would take circa 3 weeks. 3 weeks later I sat at Frankfurt airport lounge. Suddenly I felt an urge to try a banana and I ate it in 10 seconds. In 2 more days I was eating literally anything. RT came next. After it finished I was slowly dying on porridge and ensure diet for a month or so (I also refused morphine and went cold turkey). I lost 50 pounds in total. In about 5 weeks from RT finish I woke up needing a ramen. I got it several hours later and it was super delicious and almost normal.

You are very close to a turnaround, it is really about days now, soon it would be better

I found at that stage the fortisips were good at calming my throat down.  I had some pretty painful ulcers.  I was on 10 microgram/hr patches and 5mg Oxycodone every 6 hours at that stage.  Maybe ask to try something different to ease the pain.