Saliva glands improvements?

Dani

• Did you have a high dose of radiation 60 G/y.? That's what I  had I think,  so not holding out much hope after what I've been reading

AngeG said:

Did you have a high dose of radiation 60 G/y.? That's what I  had I think,  so not holding out much hope after what I've been reading

65

Mostly to one side but some to the other. Thankfully the radiologist’s contouring spared one parotid gland. 

AngeG said:

so not holding out much hope

It’s too early to be doing that. There are hundreds of minor glands that do survive. Keep chewing gum and wear a mouth guard at night( chewing wears your teeth so you don’t want to be doing more damage overnight) 

I finished treatment in Nov 2022 and my dry mouth has definitely improved over that time. I used to need water or chewing gum all the time, tried Xylimelts & sprays etc. I don't need anything now but still try to keep well hydrated. Taste & eating are fine too. I know I've been lucky but I think for most people things do gradually improve. Hang in there! 

Catriona

Thank-you Dani. You are such a positive person. I do try to be, but get so very disheartened with it all. I need to hear positiveness 

Angela

Angela. It is disheartening especially if you have a backward step but things do get better in fits and starts. We are impatient understandably. 

Hi I had 7 weeks if radiotherapy 70gy mostl to  right  sides but left side also had some blasted. I also had chemo. I had acupuncture  paid by myself around 6 months  after.  I still use sugar free gum  and xyimelts at night. My saliva kept  on improving for a good few years. It’s early days for yih make sure yih are drink g enough water as well as the heat didn’t fell. Limit tea snd coffee as both dehydrate 

Hazel x

Thank you so much for your reply. It really does help to hear this.  Many thanks my friend 

Hi, yes I am fine now. I’m two years done and I stopped needing to carry a water bottle and suck sweets after a year. I was also able to eat without the aid of sending it down my throat with a drink of liquid. The change came about quite quickly. I take one zylemelt at night 

Hi Angela,

Sorry to hear about your situation. We are all different it seems so please don't assume you will have the same experience as me, my experience is not good. I am 3.5 years since 6 chem and 35 sessions of radiotherapy to my tonsil and neck, I have been told it is unlikely now that I will see any improvement.

Initially my salivary glands would swell up like a hamster if I ate anything remotely spicy even leeks or onions; this has settled down but I can't eat a curry. I have minimal saliva during the day and chew gum every minute, the best I have found are Mentos, they are large and last a long time, I get them via Amazon in boxes of 5. I also drink lots of decaf tea, I find the warm liquid helps move the thick and very sticky saliva/mucus I do have. I drink at least 2 litres of water, probably 3 a day.

At night I have tried all sorts of sprays and gels including Xylimelts but Xylimelts upset my bowels. I get up about 3 times a night to swill out and reapply, it's exhausting but without is so painful. What I have found is using micropore tape to tape my mouth closed helps, also using Oralieve mouth wash makes quite a difference to the number of times I have to get up. I have been told swilling with olive oil could help too, I have not tried it. I have not tried acupuncture either but am looking into this.

I hope you have a better recovery with your saliva than I have had, we are always told we are all different, I know how really grim it is. I have to say though that the alternative of not having the treatment would have been far worse as my prognosis with stage 4 was a year so, I get through the nights and enjoy everyday.