New here

Hi and welcome but sorry to see you here. 

Where is the radiotherapy being targeted? Was cancer found in your lymph nodes. 
I had cancer at the base of my tongue and wasn’t eligible for surgery so I had six weeks of RT aimed at my throat and both sides of my neck. The side effects are a real challenge but they don’t last forever and most of us make a really good recovery. I am nearly seven years clear. I would do it again to be free of cancer. 
There’s masses of help here to get you through. Just ask. 

Would be my right side top lip under nose , yes cancer was found in lymph node that was removed . Well done for all you have been through x how has your eating been through the RT ? 

I couldn’t eat four weeks into treatment and had an NG tube. By 12 weeks after treatment end I could eat solid food , just couldn’t taste it. That took six months before I was happy with how food tasted. 

Hi I had tonsil cancer and 7 lymph nodes. Surgery wasn’t an option for me as some nodes  were too,close to spine and the tumour had spread to,soft palate so surgery would have been too intensive in my mouth. I hadn7 weeks radiotherapy and 2 of planned 3 chemo treatments is hard at the time but I would  do it again to give me the life I have now. I’m 7 years post treatment go away 3 times a year and 2 of those trips  are 8 weeks a time cycling in Spain. I’ve dry mouth at night but it’s manageable. I was fed by tube last 3  weeks if treatment and first 3 weeks of recovery. Have you talked this through with yiur oncologist at the end if the day teh decision of course is yours. 
wish yiu all the best in what ever yiu decide 

Hugs  Hazel x

Hello, just popping up to offer my story and to wish you well. Whatever you decide, this forum is a brilliant source of info and support - stick with us

Catriona

Hi Hazel can I just ask, do you have a dry mouth in the day as well? if not how long did it take to improve in the day time? did you do anything in particular to help with that? 

I feel like I produce no saliva at all at the moment 2 months post treatment ending. I'm about to have accupuncture to see if that helps. The xlimelts dont really help much and the spray and gel are neglible.

Cheers

Hi Irene. 

I am 2 months post chemoradiotherapy - I tried to have surgery but due to trismus they had to abort the operation after an hour. 

I have struggled with some of the side effects of the treatment and required a feeding tube because eating became and remains so difficult. It is starting to improve very slowly but in retrospect I was not ready for quite how extensive some of the side effects would be, despite reading all the literature I was given at the outset. I think you are right to carefully consider whether to have it or not and whilst I had no choice because they couldn't operate, if circumstances had've been different and I know what I know now, I think there's a chance I would have said I didnt want it and would rather take my chances on any reoccurence. Obviously this is only how I feel about it, I guess you need to weigh up how you would cope mentally with the knowledge that you hadn't taken what is presumed a 'safer' option, would it play on your mind etc?

Have they confirmed that the surgery has been a 100% success and you are currently cancer free as best they can tell?

Lew77 said:

anything in particular to help with that? 

Make sure that acupuncture is especially for salivary function. Auricular acupuncture is the most common. There are two entries in my blog with pictures of where the needles go. 
Chewing sugar feee gum is really helpful but at only two months post treatment your mouth may still be a little sore. 

Thanks Dani. Interesting that you felt a rush of saliva with Alison. Mine is indeed to be auricular also. I also came across your handy Lympho massage on your neck which is right where mine has just started to collect. it seems to have helped already after 5 minutes massage so thanks again 

Hi yes dry mouth continues during the day for a good year

or so of course we are all different

Water and a small spray bottle were my go to companions. Drinking the water for hydrate snd spraying the water as and when heeddd was time that tip by a nurse. It did improve to the point now 7 years sister I don’t need tj carry water but I always have sugar free gum with me. At night time I still and think I always will need that at night time. 2 months is early for youn

 although you might not think it. keto  trying the xyimelts you need some moisture in your mouth for them to work I now get a full 8 hours sleep. 
None of sprays on prescription worked for me but try the small water bottle spray it jerks mouth moist 

best wishes 

Hazel. X