can anyone else tell me if they have had radiation to both sides of face all the way round their neck for 33 session along with chemo 7 sessions for cancer of the tonsil. it had not spread to the neck nodes and i had surgery to remove both tonsils. it is 2 years latter and i am still suffering with no saliva and various side affects. i really am worried that i had too much radiation

Hello Janis

Radiotherapy is often given from both sides to better target the cancer cells. If the saliva glands are in the way, they stop producing saliva and recovery is dependent on the exposure they received. Recovery is only slight in most cases.

Best wishes
Vinod

Hi Janis

Been there, done it etc etc. I sincerely doubt you have been given too much radiation. Of course it is possible, mistakes happen, but I really do doubt it. If you are that worried, see your gp and ask him to find out the salient details from the hospital.

As I always say, we all handle treatment and recovery in different ways, no matter how similar our cancer. I could go into details about what I've been through and how my recovery is going, but it probably may not pertain to you. I am sorry as to not be able to offer you the help you so desperately seek but you really need to take one day at a time (I hate that line!) and let your body recover at it's own rate.

Don't get down and keep asking questions anytime you feel you need to.

Ray

hi janis
i do sympathise with you as i am in the same boat,its 1 year and 9 months since rt finished and i only have a little saliva and what there is is very sticky and my mouth either tastes very sour or constantly tastes salty and i keep being sick no matter what i try to eat.i feel the rt caused me the most problems.some people recover quickly and have some saliva and some like us dont,its very frustrating isn't it?i just want to be normal not constantly reminded that i had cancer.take care janis.love shirl xxx

Sounds like you and my father had the same exact treatment - 33RT and 7 chemo - part of our new lottery numbers he was fried from both sides and all the way around - he called me the other day to celebrate he had licked an envelope with his own spit!!!!!! but it comes and goes and taste buds are weird but he is smiling - he is alive

Hi all, it's only been 5 months since I finished 30 rad's, but I'm still on feeding tube. I'm getting really impatient! My problem is mucous though. I've tried everything the board has suggested and nothing helps.

I know this is no help to all of you with lack of saliva, and I hope with time, you're saliva function improves.

Sorry, but I just needed to vent. I feel a bit better now!

Best wishes to you all, Cricket

Hi Janis, try not to worry I am sure you have not been given too much ,it is a very hard treatment and especially when given to head and neck .Unfortunately the most common side effect would appear to be loss of saliva .My husband had 35 sessions the first time along with Chemotherapy and was really unwell, eventually once he had regained his strength and was able to eat and drink again he did not regain any saliva production back .He has now gotten used to carrying water and goes through 2 at least Glandosane saliva sprays a day .

Drinking tea and coffee and even double cream helps keep his mouth operable .I cant say he is happy with the situation but manages .Paul had a set back and then went through another 30 sessions of radiotherapy in May, although it was a slightly different kind and this time faired better but is having a problem with neuralgic head and face pain at moment.

Try not to worry dry mouth seems to affect everyone and is very difficult .Try using the biotene products and ask your doctor for the saliva sprays they come in different flavours and i think their a few different brands.Paul finds the Glandosane natural one beneficial especially if he is chatting in company and on the phone .

Hope this helps .

Hi Cricket ,you will get there, Hubby was on peg tube for nearly a year and was really fed up eventually he got there and so will you .As for the mucous well if someone could find a potion for that they would make a fortune !!! It drives Paul mad cricket ,Paul uses a nasal syringe to douche with sachets u mix with warm water and he does this every couple of days and feels it helps clear out some of the gunge maybe worth a try Cricket ,u can get the kit thing on prescription from doctors .

Hope u had a good Xmas and New Year and next year you will be tucking in Cricket .

Best wishes ,

Bell and Paul x