Salivary Gland pain months after RAI

bkane101
bkane101 Member Posts: 35
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
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Comments

  • amorriso
    amorriso Member Posts: 185
    swelling
    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.
  • teamwink
    teamwink Member Posts: 97
    me too
    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
    bkane101 Member Posts: 35
    teamwink said:

    me too
    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!

    I haven't noticed that any
    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
    sunnyaz Member Posts: 582
    bkane101 said:

    I haven't noticed that any
    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

    Hope you feel better soon!
    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
    iggymurphy Member Posts: 34
    bkane101 said:

    I haven't noticed that any
    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

    lemon drops
    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
    amorriso Member Posts: 185
    teamwink said:

    me too
    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!

    Food triggers
    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
    sunnyaz Member Posts: 582
    amorriso said:

    Food triggers
    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

    Hydration
    Can't say enough about hydration. All day long, I drink, pee, drink, pee, drink, pee. It's part of my life now.
    ;)
  • jecklehyde
    jecklehyde Member Posts: 33
    sunnyaz said:

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

    Parotid Glands
    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
    teamwink Member Posts: 97

    Parotid Glands
    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.

    under jaw?
    I am having issues but it is with the salivary glands right under the jaw - anyone with this?
  • nasher
    nasher Member Posts: 505
    yes it can be from rai
    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
    jecklehyde Member Posts: 33
    nasher said:

    yes it can be from rai
    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...

    Salivary Glands
    Parotid glands are the salivary glands in the jaw.
  • CherylMike
    CherylMike Member Posts: 118

    Salivary Glands
    Parotid glands are the salivary glands in the jaw.

    There is a medicine to help
    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
    Randy10 Member Posts: 1
    Pain in jaw and parotid gland swelling
    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
    hcmmcguire Member Posts: 6

    Parotid Glands
    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.

    Salivary Gland Damage
    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!!!
  • hcmmcguire
    hcmmcguire Member Posts: 6
    Randy10 said:

    Pain in jaw and parotid gland swelling
    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.

    Same Here
    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
    bouncer Member Posts: 30

    Same Here
    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.

    Included in the instructions
    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
    Jessica's Mom Member Posts: 2
    Take this to your Endo....

    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. 

  • Ravisran
    Ravisran Member Posts: 1
    amorriso said:

    swelling
    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.

    Swollen lymph node on left side under jaw

    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

  • galinbakersfield
    galinbakersfield Member Posts: 23
    Saliva glands 4 months out

    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
    Hannah1 Member Posts: 63

    Saliva glands 4 months out

    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. 

    Salivary gland

    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.