Good afternoon

Hi Colster1975 

Welcome. Glad you have found us. We are a friendly bunch with masses of experience. I am one of the Community Champs in this group and hopefully I can guide you around.

My throat cancer was base of tongue for which I had six weeks RT  I’m now over six years clear and doing really well… back to my old self apart from a dry mouth at night  

Colster1975 said:

I've undergone intensive chemoradiotherapy on my neck, which I completed some 2 and a half months ago. Trouble is, the side effects seem to be taking forever to shift. Anyone else find this?

You are still pretty early in your recovery  I was still on morphine at 12 weeks. It’s a marathon not a sprint but you will get better in fits and starts and sometimes backwards so don’t worry all this is normal  

Keeping your mouth really clean and moisturised is key so use your mouthwashes, brush your teeth really well and if you can,  try some sugar free chewing gum to keep saliva flowing  Amazon sell mint free gum if mint is a little strong  

Keep your swallow and jaw exercises going  as they are for life  

How are you feeling in yourself? 

I feel terrific, perfectly fine. It's just my tongue, if I yawn a big yawn, it feels like my tongue is being ripped out. I'm going to try a warm, salt water mouth rinse, see if that helps. Tomorrow, I need to pick up a script of carbosisteine for mucositis

Hi. I was diagnosed with base of the tongue cancer which had spread to my tonsils and lymph glands. I only had 3 rounds of chemotherapy along side 35 boasts of radiotherapy. My symptoms are very present in the form of dry mouth, throat pain, tinnitus (I wear hearing aids now) radio/chemo caused significant hearing loss. Reduced mouth opening. I finished my treatment August 24.  Which symptons are yiu finding persistent?  I'm sure you'll find advise on this forum. If I can help I will. Welcome. X

Dani, Hi. Can I pick your brains please. When you say dry mouth at night! Has that always been the case or has this improved. Mine is dry all the time. 

Miclee said:

Dani, Hi. Can I pick your brains please. When you say dry mouth at night! Has that always been the case or has this improved. Mine is dry all the time. 

It did improve quite a lot but it does remain. We produce less saliva at night anyway but mine is exacerbated by mouth breathing at night. I use sleep tape cut into pieces so that I have a narrow ( half inch?) piece running from just under my nose to under my bottom lip. This  let’s me have a drink from the corner of my mouth through a straw if I need one. It has made a big difference. I also use a xylimelt tucked into my gum and I suspect I always will. 

Colster1975 said:

It's just my tongue, if I yawn a big yawn, it feels like my tongue is being ripped out.

Do your jaw exercises religiously to loosen scar tissue causing this tightness and pain. Have your ENT show you where it is next time you have a scope. I have a narrow band of scar tissue that causes the same symptoms if I relax my exercises. 

Colster1975 said:

I'm 50 and live in North Devon.

Lovely part if the world ️️

I am 2 years out of treatment for stage 3 tonsil cancer, chemoradiotherapy, age 71, the treatment and recovery takes a year or so out of most of our lives, lots of different issues, PEG feeding tube infections, mouth and throat pain, dry mouth, low mood, loss of taste and appetite etc. The side effects do eventually subside and life returns to a new normal, some of the lucky ones get off pretty lightly, minimal side effects, fire away with any question, plenty of posters on this forum with great advice.

I really wish I'd discovered this forum sooner.

I guess I was misinformed, when the professionals told me recovery was a matter of either a few weeks or, a few months

Colster1975 said:

I guess I was misinformed, when the professionals told me recovery was a matter of either a few weeks or, a few months

We are commonly told that. It’s patently not true. There must be a balance between plunging patients into despair over long recovery and overoptimism 

My oncologist never minced words. He told me that my cancer would take a year out of my life. It did but I was fixed.