Advice please to help with mucositis issues following RT

Hi Jennie

So sorry you have so much pain. It sounds really awful. I had chemo and RT for tonsil cancer, with spread to a lymph node. During and after treatment I developed 2 large ulcers, one in my throat and one on the edge of my tongue which was constantly rubbing against my teeth. Nothing helped at all. After 5 months the dental hospital drilled off the edge of one tooth and the result on my tongue was almost instant, such a simple procedure but such a relief!!! The ulcer took about 2-3 weeks to completely go. The other in my throat took much longer and prevented me eating for months, but it eventually went of its own accord.

Is it possible you could see if a dentist can help?

I hope you get some proper relief soon. Hang in there x

Jennie said:

Does anyone know when I will be able to see light at the end of the tunnel please? For info, I live in Greece, not the UK and we don't have a wrap around system here.

Hi Jennie and welcome. I had issues with my tongue for a few months but it did improve in the end. It’s just time I’m afraid 

Do you have Gelclair. That the usual mucositis stuff we get prescribed and it’s good stuff. You can dilute it or dab it on neat   It’s worth checking if you have oral thrush on top of everything. Fluconazole is the drug of choice. If you have thrush don’t be palmed off with nystatin. It doesn’t work. 

Good evening Jennie, i also had the edges of a couple of my teeth ground down as they were rubbing against my tongue so maybe a visit to a restorative dentist could help also a gum shield could help with the rubbing. I normally suggest 3 months as a good target to aim for before you see decent improvements. Wishing you all the best,take care. 

                                                                                                  Chris x

Thank you all so much for replying and for the advice and I cant tell you how much I appreciate it. Cancer can feel like a bit of a lonely world sometimes and it's so good to connect with people who understand the issues. I've tried to explain (with difficulty !) what's happening pain wise in my mouth with family and friends and I really get the feeling they think I'm just being a complete wimp and I simply need to get over it. They clearly have no idea how debilitating and depressing the pain is.

Following your advice, I'm going to ring my dentist tomorrow to make an appointment to see if he can do anything for me. I had to have a lot of dentistry done prior to RT and now have crowns fitted near the sores so I'm not sure what can or cannot be done but it's a positive step and thanks to you, I'm feeling so much better in myself.

Thank you again xxx

You might find this useful too 

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Good evening Jennie, nobody knows what we go through mentally, physically, and emotionally they think because the tumour/cancer has been removed we are all ok and firing on all cylinders. Its even harder for me as i cannot speak and my Dr witnessed me when i was angry because she was not listening or taking notice of my comments. So happy you are feeling better in yourself, all the best.

                                                                       Chris x