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Salivary Gland pain months after RAI

bkane101
Posts: 35
Joined: Apr 2011

Hi everyone. It's been awhile since I posted anything but now I'm having more issues! I had RAI about 5 1/2 months ago and my salivary glands hurt SO bad! This just started a week ago. My Endo looked surprised and said it couldn't be because of the radiation and to just take some Advil. Of course whenever something is wrong now I blame it on the cancer or radiation or lack of a thyroid but maybe it's something else. It's not my jaw or my sinuses so I'm hoping someone else can shed some light into this. I also have mild swelling. What's funny is on the thyroid cancer website there just happens to be a survey regarding RAI and salivary glands and part of the questions are regarding 3 to 12 months after RAI. Why would they put that in if it doesn't happen? I think I need a second opinion. I hope someone on here has dealt with this so I know where to turn.

Barbara

amorriso
Posts: 186
Joined: Oct 2010

Hi. My salivary glands first swelled about 2 months after my RAI. I have one on the right side that can get a bit swollen still (6 months later) if I dont drink enough fluids. There were also certain types of foods that seemed to trigger the swelling.

My dentist was the one who told me the glands can be affected from the radiation.Sometimes stones can form in the small ducts. My physiotherapist showed me how to massage the area.

See if you can find a dentist who has some knowledge of effects of radiation. Or an ENT doctor. In the meantime look online to find the massage techique, drink lots of water, use a warm compress on the area, and the advil.

Its painful that I remember. I hope you can get some relief.

Ravisran
Posts: 1
Joined: Aug 2013

Hi 

my wife had follicular carcinoma in thyroid gland.she had two surgeries for that and RAI treatment after that.she has RAI treatment in May 2013. Now she has swollen lymph node on left side of her neck under jaw. In first week of August she was complaining of spalate throat palate burning. We went to endo and he give her some antibiotics which did not helped her at all. after that we went to our family doc and he put her on different antibiotics.she is relieved from palate burning but she still have swelling under jaw.she told me that she feels mild burning in swelling and it really bothers her as she thought of it as cancer. She is really scared. 

I am wondering if it is some side effect of RAI.or may b some infection.swelling is noat painfull at all the times.what should I really her about it.should I take her to another doctor? Or any other suggestions please

teamwink
Posts: 97
Joined: May 2011

It took me a long time to find out the issues I'm having are due to salivary glands _ I was not totally sure what the swelling was and thought the cancer had come back! No one told me the areas swollen were the salivary glands. My question is what food do you see trigger the swelling? I'm trying to manage them, as the massage and drinking tons of water just is not doing the trick at all. It is uncomfortable a lot and I wonder when this goes away!

bkane101
Posts: 35
Joined: Apr 2011

I haven't noticed that any foods triggered it. The pain is just constantly there. It's MORE painful when I eat bread because it takes longer to chew than other foods. I'm been massaging the cheeks and trying to eat candies so help. I hope it goes away. It's so weird that there are symptoms that just keep popping up months later! I had a sore throat and a chord in my throat that kept snapping and that started 3 months after surgery, but that finally just went away and now this started. It's never ending! Not to mention the medication issues but that's a whole other story!

Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Barbara,
I am so sorry to hear you are feeling bad. I am seven months out from RAI and haven't had any issues so I don't claim to feel your pain, just feel badly for you. Hoping you will be back to feeling better soon. Keeping you in my prayers.
Blessings,
Julie-SunnyAZ

iggymurphy
Posts: 34
Joined: Sep 2011

I was told sucking on lemon drops helps.....haven't had to try it yet myself but it was a tip from someone who had RAI twice. She swore by it.

amorriso
Posts: 186
Joined: Oct 2010

For me it was sweet, tangy and sometimes sour flavors that triggered the swelling. Anything that would make you salivate more. I remember having a few bites of a sandwich with some type of sauce and literally watched my right gland swell in the mirror! I started paying close attention to what I ate and what the reaction was.

My physio showed me the proper massage technique - this sounds gross but I could actually squeeze the blocked saliva out - ewwwww, but I got relief.

A dentist who was very read in the effects of radiation also told me that it can cause narrowing of the ducts, and often stones will form. Some pass (like mine), others may need to be removed. And he said most doctors dont realize it plus it can occur many months afterwards.

My swelling seems to be gone, but I'm still careful and make sure I drink whenever I eat. And I make sure I dont get dehydrated - so I drink a lot all day!

Hope you can find some answers.

Andree

sunnyaz
Posts: 582
Joined: Oct 2010

Can't say enough about hydration. All day long, I drink, pee, drink, pee, drink, pee. It's part of my life now.
;)

jecklehyde
Posts: 33
Joined: Nov 2007

I had been told from my support group that approx 6 months after RAI, there would be a possibility that your cheeks would swell and become painful. This did happen to me and I was told to massage the area in a circular motion pushing first away from your face. Sometime you can feel and popping and then a salty taste in your mouth.

In Feb, it will be 5 years since my RAI and I have started to feel pain again where I cannot sleep with any side of my face on the pillow. I was sent to a salivary gland specialists. It seems that the RAI actually destroyed my parotid glands and I have no salivia in my mouth (I knew that from the dry mouth!) He said depending on the amount of RAI you recieve you will have this happen. I had 151 millicuries which he feels is a high dose.

The doctor said this pain can happen anytime after RAI, not just 6 months later, which is what I was told. I will be going through a radioisotope study and the doc believes he will be able to take care of my pain, but cannot do anything with my glands since the RAI destroyed them.

teamwink
Posts: 97
Joined: May 2011

I am having issues but it is with the salivary glands right under the jaw - anyone with this?

hcmmcguire's picture
hcmmcguire
Posts: 7
Joined: Aug 2011

I have Salivary Gland damage and block/ closed ducts. My teeth were turning black despite frequent brushing and flossing. The pain and dry mouth has been unbearable. My onco sent me to an Dental Oral and Facial Pain Specialist and that was the best thing ever!!! There i did a spit test and thorough inspection to confirm. I failed their tests miserably and was told the damage was permanent. We can only make things better.

I was given a prescription for a toothpaste to place on my teeth for absorption (it fixed the teeth issue). I was told to use an oral rinse (biotene). I was prescribed Evoxac to force saliva production. That alone made the difference. Because the production was increased the pain of the blocked ducts was GONE. The pill lasts about 5 to 6 hours for me so I take it 3 times a day. If I miss one the pain and dry mouth come back pretty fast. It is expensive but absolutely worth it!!!

nasher
Posts: 507
Joined: Apr 2010

yes salivary gland pain can be caused by RAI

yes my salivary glands are reduced production

for the first few months my glands hurt now and then...

jecklehyde
Posts: 33
Joined: Nov 2007

Parotid glands are the salivary glands in the jaw.

CherylMike
Posts: 118
Joined: Oct 2009

My late husband had head and neck cancer. The radiation destroyed his salivary glands to the point where he had thick ropey goo instead of saliva. His doctor prescribed him Evoxac. It helped him (not back to normal, but he had some moisture). He also used the biotine products and drank water all day.

Randy10
Posts: 1
Joined: Feb 2012

I had my RAI yesterday and this morning I woke up with pain in the side of my jaw and swelling underneath. My doc said to drink lots of water, suck on lemon drops constantly and massage the area. I was hoping that this goes away but from the other posts I'm not too optimistic.

hcmmcguire's picture
hcmmcguire
Posts: 7
Joined: Aug 2011

My pain from RAI was instant... the doctor didn't believe the severity. I insisted for a year this continued. I finally ended up with multiple side effects and my onco started to believe that I did indeed have issues that required attention. The first specialist was a eye doctor (not the ordinary type). I had closed tear ducts which effected my ablility to work and drive. After surgery to open the ducts, I stopped tearing for no reason.

I have Salivary Gland damage and block/ closed ducts, too. My teeth were turning black despite frequent brushing and flossing. The pain and dry mouth has been unbearable. My onco sent me to an Dental Oral and Facial Pain Specialist and that was the best thing ever!!! There I did a spit test and thorough inspection to confirm. I failed their tests miserably and was told the damage was permanent. We can only make things better.

I was given a prescription for a toothpaste to place on my teeth for absorption (it fixed the teeth issue). I was told to use an oral rinse (biotene). I was prescribed Evoxac to force saliva production. That alone made the difference. Because the production was increased the pain of the blocked ducts was GONE. The pill lasts about 5 to 6 hours for me so I take it 3 times a day. If I miss one the pain and dry mouth come back pretty fast. It is expensive but absolutely worth it!!!

I tell you this not to scare you but to encourage you to keep track of the weird things and the pain. If you don't it may be impossible to convince the doctor(s)... Do stay positive, God doesn't give you anymore than you can handle.

bouncer
Posts: 27
Joined: Apr 2012

Included in the instructions for my recent RAI treatment, was to ensure I had plenty of sherbet lemon sweets or similar hard boiled sugar sweets, alternatively soft chewy fruit flavour sweets would do. These were to be "chain" eaten for one hour, six hours after taking the capsule. These sweets must then continue being eaten, around once an hour, for the next six months or so. As most UK RAI treatments are carried out in hospital, they do control what happens, and if I had not brought any sweets, they had some in reserve!

Jessica's Mom
Posts: 2
Joined: Apr 2013

http://www.thyroidcancercanada.org/userfiles/files/RAI_SalivaryGlands_Mandel.pdf

 

They tend to minimize the potential complications of RAI.  My daughter, Jessica, has had thyroid cancer complete with a dose of RAI... now, 6 months later... it's news to us that damage to the salivary glands were KNOWN complications.... 

Apparently, not KNOWN to all docs...  your ENDO should know this. 

galinbakersfield
Posts: 23
Joined: Apr 2013

I had RAI in april 2013, I woke up the morning after taking the pills with both sides of my face so swollen that I couldn't even use my mouth. I was in the hospital and I sent the pictures to my husband and he was surprised on how big my face was. It went away about two weeks out, now I am 4 months out, almost 5 and my left side is still swollen off and on. I called my Endo and he's like "yeah, we probobly killed your saliva gland call your regular dr get an antibiotic and if that doesn't work then you are going to possibly have to take saliva medication. No other information than that. So, now I start another journey of this cancer crap. 

Hannah1
Posts: 62
Joined: Jun 2012

Hi, I also have swelling on my right side of my neck for 5 months only when I eat then it goes away after eating. Now I 

have severe dry mouth. Went to my oncology Dr and said I have damaged salivary gland due to RAI. He said that's the side

effects of radiation. Heprescribe me medication but seems like its not working. I am using biotene products and helps a little

But constantly drinking water. It's been going on since the start of the year. Dr. Said there's no other medicatifor if the salivary 

gland has been damaged. I guess I'm stuck with the biotene products. 

I hope your swelling will go away in time too. How is your appetite?  Are you eating well? Take care and god bless. 

candid
Posts: 16
Joined: Mar 2014

hello everyone,

 

thanks for bringing up this important issue!

 

I had swollen nodule under my left jaw a few months after RAI treatment. My ENT thought it was lymphoma or a recurrence and biopsied me twice (with no recurrence or lymphoma at the end; thank you). It is painful and almost 4.5 years after the treatment it is still there. My endo sends me to ultrasound every year specifically checking it, but finally last year she said it might be my salivary glands affected by the RAI. I have been chewing gum in the last 4 years extensively and I think one of the reasons for that is instictively it helped me with my salivary issues.

I have been reading massaging the salivary gland here, which I will investigate to see how it will help me. many thanks everyone; knowing I am not the only one going thru it (albeit it looks like I am the one with this for so long) is quite a relief.

 

candid

 

bouncer
Posts: 27
Joined: Apr 2012

Having posted earlier on this thread, having staved off dry mouth problems with loads of sherbet lemons sucked after RAI, I now find I have a dry mouth, two years after RIA. Suddenly happened about three weeks ago. Wake up with mouth swollen and unable to speak. Have had to buy more sweets (candy), to combat this, as it continues all day. (Bang goes my weight control!) Have my annual chaeck up at Oncology next month, so will see what she says.

galinbakersfield
Posts: 23
Joined: Apr 2013

I am now post 1 yr after afirst ablation, and 6 months out from second ablation (had two in one year) and I am having horrible pain. I actually have a (parotid) gland that won't stop hurting. I have been to me ENT more time than I can count. He has put me on antibiotics, steroids, put two wholes in the saliva area, which helped for a bout a day each and hurt like heck when he did it. My pain is so bad I can barely chew, I can't move my face alot, I drool alot, can't slep on that side, etc.  I have looked in to this further and what I found out is there is a higher chancer for "head/neck radiation treatment" patients to also have problems in this area not limited to perm damage but also cancer. I have an appointment in a week with my ENT to discuss having the glad taken out because seriously I am already dealing with the "possible" surgery side affects so why not do it, and at the same time have them checked out by a pathologist. Good luck to you all. 

amorriso
Posts: 186
Joined: Oct 2010

I remember having pain in my salivary gland a few months after RAI. It ended up being a dental problem. I needed two root canals...I would not have figured it out though had a tooth not broken.  

So just a suggestion...go see a dentist and see if perhaps the pain or problem is being caused by a bad tooth. Apparently radiation can cause problems with teeth. 

 

Hope,younfind a solution

galinbakersfield
Posts: 23
Joined: Apr 2013

I have recently been scheduled for surgery to have my left parotid artery taken out. Apparently there is a small chance that the gland can be perm damaged from too much RAI and when this happens it also causes problems when your salivary glands dont work so on top of that I have two teeth that need root canals and caps. I will be having surgery end of June 2014, then the dental work in July 2014. My dentist said to never stop taking my saligen, and that this problem will get worse. Since I don't have very much salivary production my teeth are bound to deteriorate more over time. Totally sucks when to take care of one problem it causes about 20 other problems, and most of them are going to be perm problems. :( 

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