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Loss of Saliva glands 7 months after RAI

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

HI all
I had a total TT last October for Papillary CA and then RAI in February. My jaws hurt a bit after the RAI and I was completely exhausted for months. Then in June my mouth just dried up and my paratoid glands got really swollen. The swelling and pain in mostly down now - although after I eat the glands swell up again. What really bothers me is that my mouth is so dry, I am constantly drinking water and sucking on those horrible lemon candies. Eating and even walking/running is so difficult because of the dryness.

My endo told me that this can happen but there is nothing I can do about it. Has this happened to anyone else??? Does it go away???

Any advice, this is driving me nuts!!

thanks

jecklehyde
Posts: 33
Joined: Nov 2007

Usually happens around 6 months after RAI. You need to massage the sides of your jaw in circular motions starting from the bottom and bring your hands up and forward. You should start to taste a saltly taste in your mouth. This helps relieve the pain. It shouls go away if you continue to do this for a few days. Your dentist should also help you to massage it if you do not find relief.
Good Luck

1nathaliakarina
Posts: 13
Joined: Nov 2009

I had TT in May 2009 for Papillary Cancer. Around March of this year I felt dryness in my mouth. My tongue got stuck to my mouth very often and I started to wisp when I spoke. I went to the Doctors to see what it was and they told me that my salivary glands were only producing about 15% of saliva and that with the RAI it is normal for this to happen. All they suggested was to drink lots of water and lemon hard candy. I did find Biotene toothpaste and chewing gum that did help very much. They sell it in the pharmacy over the counter. So that might help out a little. It helps me out alot.

I hope this information helps you

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

Hi
thanks for this...I will try to find this tooth paste. I have had some relief with accupunture but this keeps flaring up.

no one told me that this is one of the side effects!!!

nasher
Posts: 507
Joined: Apr 2010

I am also haveing problems

I am also haveing lots of issues with low salavary gland production

my dr says there isnt really much they can do about it...

I end up carring water with me all the time and i end up drinking alot more water.

oh side note if you are drinking 2x or more times the recomended amount of water daily you may be flushing the needed water soluable vitamins and minerals out of your body. Because of how much i am drinking i was put on some supliments by my nutritionist.

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

I have had this problem since June and it is really not getting better. i also carry water with me everywhere. I did not know that drinking too much water is also bad - I will check into that with my doctor.

I did find some relief in trying out different kinds of mouth wash a few times a day. It seems to trigger more saliva production.

What really bothers me is that I can no longer really enjoy the taste of food - it is hard to eat and someetimes my saliva glands swell when I eat and it is very painful.

does this go away or is it permanent??

thanks
robin

CherylMike
Posts: 118
Joined: Oct 2009

My husband had head and neck cancer. He had to undergo radiation to his neck. In the process his salivary glands were destroyed. The doctor proscribed him a 2 different medications (Saligen and Evocovax - not sure of the spelling) to help with the dry mouth problem. It helped him. I do not know if this would help you. You may want to go on the head and neck discussion board as I think destroyed salivary glands are (unfortunatly) a common side effect of the radiation. (I am on this discussion board because I have thyroid cancer). Hope this helps!

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

Hi
I am going to the endo again tomorrow and will ask for something. This is also destroying my teeth so I don't want to leave it.

Before RAI I had not heard about about the chance that the saliva glands could be effected so was not aware that it is an issue.

Thanks for your advice and hope you are doing well.

Robin

CherylMike
Posts: 118
Joined: Oct 2009

Hi Robin~ The dentist made my husband a set of "teeth trays". He had a special paste he would fill them with and wear. It contained a lot of flouride. Good luck. (I have not gone through RAI yet - am currently on the low iodine diet. My endo told me to suck on sour candies after treatment (as much as I could stand) as this would make the glands produce saliva and keep flushing the radiation from the salivary glands.

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