RE: salivary glands

[Guest guest]

> ....When I saw my endo

> several months later he dismissed my question with the

> usual not related to RAI routine.

that, and " the check is in the mail " are way up on the list of frequently made

but highly questionable statements ...

> .... my salivary glands are still swollen all the time and whenever

> I eat they get hard and really really swollen and hurt. ...

Has your doctor suggested a cause for your painful glands? Even if it is

assumed that the

original cause is RAI, is it an inflammation? calcified stones?

Once again, I am about to give an opinion on something with which I have no

experience :-]

After reading so many letters on the subject, my impression is that the pain &

soreness almost always fade away, sometimes taking as long as a few months or up

to a

year. The only long-lasting effect I have heard of is dry mouth due to lack of

sufficient saliva

production (or blocked salivary glands).

some solutions ....

- Some people who know they have this problem have had success with taking

steroids and/or

antibiotics prior to RAI.

- For dry mouth, Biotene makes toothpaste and mouthwash (and I think gum,

too) specifically

for this problem. I believe it is sold without a prescription.

- Massage, warm compresses (and/or ice packs) and ... yes, sour candies (or

fruits) are said

to help, as does chewing gum (once you are no longer radioactive, of

course)

I don't know if anyone has ever mentioned this, but I would look into

getting a professional

massage focusing specifically on the jaw and salivary glands. There might

be some tricks of

the trade that would help. I would also speak to my dentist who might have

some

suggestions.

I am copying below some suggestions from people who have dealt with this

problem, and I

will post separately an article on salivary gland problems ( " CONCLUSION:

Parenchymal

damage in salivary glands caused by HD-RIT can significantly be reduced by

amifostine, which

may improve the quality of life of patients with differentiated thyroid

cancer " ).

Good luck, and please let us know when you find an answer

- katie

-----------------------------------------------------

quotes from list members :

- to ease the swelling and pain ... massage the area from the ear lobe down

toward your chin.

- after surgery the duct under my tongue swelled & was extremely painful!

The ENT under a

local anesthesia cut along the duct & found nestled away a very large

stone! Removed it &

have been fine since.

- started having serious parotid gland problems ... So here's what I ...

have done.

Go to the Emergency Room. The doctor can usually massage the calcified

stone out.

They have done this twice successfully. Two other incidents I went to my

dentist who put a tiny needle type instrument in the salivary gland itself to

get it working. I always massage my

face well, start at the ear, and follow the gland in a circular motion around

your cheek. It does hurt but it is such a relief when the stone comes out or

the gland starts flowing again. The

last thing I did was see an ENT who gave me meds (Humibid) to increase saliva

production.

- I have tried warm rice bag, Advil, and now Aspercream on it [and gotten

some relief]

- it's important during this period to practice good dental hygiene as our

teeth are vulnerable to decay with the loss of saliva. There are some saliva

substitutes available in drug and

health food stores that may help.

- I had a plugged duct - left side only - that would become hard and

swollen when I ate.

It was so bad that I was finally sent to an ENT Doctor who froze the inside

of my cheek ... and

then gradually opened the duct with smaller to larger pins. It seems to

have worked because

they have not become swollen or sore since. I can still feel a bit of

tenderness on that side of

my cheek and if I " milk " it (by pressing my hand against my cheek from a

back to front motion) I can get it going quite easily

Then there was the calcium connection ...

- saliva glands ... were blocked, sore, swollen [intermittently]....

I matched this pattern to taking (and stop taking) calcium supplements....

It seems to

correspond. When I take calcium, within a few days my saliva glands start

swelling up when I

eat, hurting, drying up. When I don't take calcium, within a few weeks,

these symptoms

disappear almost completely (slightly dryer mouth than before ... but

otherwise ok). I stopped

the calcium ... and have been ok since.

- I have had a horrible time with my salivary and parotid glands as well.

I don't take calcium

supplements ... but I have been seen in the emergency room 2 times and 1

time in primary

office and 1 time with ENT, they all were able to massage out calcified

stones. Before my

diagnosis of pap thyca I was diagnosed with hyperparathyridism or

hypercalcimia. Calcium

was not being used properly in my body and because of this I got

kidney stones. So I thought that along with the treatment RAI stimulated

more calcium

deposits and thus the salivary problems. ... I now take humibid to help

stimulate salivation ....

[use] dry mouth toothpaste biotene ... chew sugar free gum to constantly

make the salivary

glands work.

And from Dr. Ain ....

One of the potential nuisances (as opposed to dangers) of radioiodine therapy is

permanent

damage to the salivary glands. This may result in diminished flow rates of

saliva. There are a

few medical consequences and solutions:

1) Decreased saliva may make eating certain foods difficult. This can be

helped by using

frequent small sips of water while eating.

2) Decreased salivary flow produces increased risk of tooth decay because

saliva is critical to

wash food particles off of teeth after eating. I advise patients to carry a

small travel toothbrush kit in their pocket or purse. They should brush their

teeth after EVERY meal. Sometimes this

produces an added benefit by reducing between meal snacking.

3) Decreased salivary flow predisposes to " salivary stones. " This refers to

the swelling of one or more salivary glands (located under the ears and under

the lower jaw) due to partial blockage

of the corresponding salivary duct by dried saliva. This can be startling and

worrisome if not

recognized for what it is. I do not advocate immediate use of antibiotics

unless there is fever and elevated white blood cell counts. Instead, this

problem usually responds to swishing warm

water (or tea, coffee, broth, etc) in the mouth while gently massaging the

swollen salivary gland.

Usually, there is a sudden sour taste as the stale saliva is released and the

swelling goes away.

If this does not work or if rapidly and frequently recurrent, then it is

important to go to your

physician. Usually this problem happens periodically and is then quiescent for

a long time.

- katie

[Guest guest]

> ....When I saw my endo several months later he dismissed my question

>with the usual not related to RAI routine.

It is related to RAI - but generally (YYMV) - the symptoms are

temporary.

> .... my salivary glands are still swollen all the time and whenever

> I eat they get hard and really really swollen and hurt.

Grab some crackers and go to see either an ENT with experience

in evaluating salivary gland function, or a dentist. Eat infront

of them and show them the results. They should examine you to

see the potential cause of your swelling - eg general inflamation,

blockage etc.

For me, time was the best medicine. Initially, my glands went like

rocks when I ate - and then after a few months they would only swell

when I ate sour or spicy food. Now every thing is normal.

When I felt uncomfortable, a warm drink swished around in the mouth

did help. For me, the massage (ear to jaw) really didn't help, but

it may be worth a try.

Hopefully you will feel more comfortable with time!

dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99

[Guest guest]

Okay, dumb question here. What does it matter if you use certain methods

to keep salivary glands draining but not to chew gum (as long as you are

radoiactive?) I know, probably something simple. I didn't have these

problems before, so this is new to me.

--- katiekabob@... wrote:

>- Massage, warm compresses (and/or ice packs) and ... yes, sour candies

(or fruits) are said to help, as does chewing gum (once you are no longer

radioactive, of course)

And-- did you say you have MORE chocolate LID goodies? Are they really

easy like the others? I'm cooking the not so easy stuff now. , I done

ya' proud. I made stuffed peppers, remembered to use only the egg white

and non-iodized salt.

Thanks for the information.

=====

grammyDx2@...

1965 TT Well diff mixed pap/foll w/mets to lymph nodes

1982 176 mCi RAI for neck & chest mets

Hypoparathyroidism

Off Levoxyl 8/18 for scan in early Sept.

__________________________________________________

[Guest guest]

GrammyD wrote:

> .... What does it matter if you use certain methods to keep

> salivary glands draining but not to chew gum (as long as you

> are radoiactive?) I know, probably something simple......

I'm not sure I understand your question.

Are you asking if it makes a difference what you use to keep your saliva flowing

as long as you keep it flowing?

If that's the question, then the only thing to keep in mind is low iodine

restrictions. Once you're done with the LID, then anything that does the trick

is a wonderful thing.

If I misunderstood your question, please ask it again.

(hard to believe, I know, but English actually is my first language, AND I'm not

hypo :-)

thanks -

katie

> --- katiekabob@... wrote:

> >- Massage, warm compresses (and/or ice packs) and ... yes, sour candies

> (or fruits) are said to help, as does chewing gum (once you are no longer

> radioactive, of course)

[Guest guest]

Hi ,

I knew immediately I asked the question, it was confusing. I'm sorry.

--- katiekabob wrote:

>If I misunderstood your question, please ask it again.

Okay, here goes: Below, you said that these things were okay AND chewing

gum (once you are no longer radioactive, of course)

Why do you need to wait until you are no longer radioactive to have gum???

katiekabob wrote:

- Massage, warm compresses (and/or ice packs) and ... yes, sour candies

(or fruits) are said to help, as does chewing gum (once you are no longer

radioactive, of course)

=====

grammyDx2@...

1965 TT Well diff mixed pap/foll w/mets to lymph nodes

1982 176 mCi RAI for neck & chest mets

Hypoparathyroidism

Off Levoxyl 8/18 for scan in early Sept.

__________________________________________________

[Guest guest]

> Why do you need to wait until you are no longer radioactive to have gum???

Aha! a simple question! :-)

The reasoning behind not chewing gum while you are radioactive is because you

don't want to keep a radioactive wad of gum in your mouth! Disposal is also an

issue, but not the main one here.

I suppose if you wanted to chew gum and spit it out after only a few minutes, it

probably wouldn't be a problem, but keeping the same wad in for much longer

seems like a REALLY bad idea to me.

make sense?

-

NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on .225

levothyroxine)

[Guest guest]

Yup. Thank you!

--- katiekabob@... wrote:

> > Why do you need to wait until you are no longer radioactive to have

> gum???

>

> Aha! a simple question! :-)

>

> The reasoning behind not chewing gum while you are radioactive is

> because you don't want to keep a radioactive wad of gum in your mouth!

> Disposal is also an issue, but not the main one here.

>

> I suppose if you wanted to chew gum and spit it out after only a few

> minutes, it probably wouldn't be a problem, but keeping the same wad in

> for much longer seems like a REALLY bad idea to me.

>

> make sense?

>

> -

> NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on

> .225 levothyroxine)

>

>

[Guest guest]

Mine got so bad that my salivary gland got plugged and my jaw froze (sorry to

worry you) but saw an ENT specialist and he had me doing a special massage

to keep the saliva flowing and it helped..it eventually cleared up. I thought

I was paralyzed it was so bad. Sour candies helped too.

Suzan

[Guest guest]

I had a 150 mc of RAI in 1994. In the years since then, I have had soreness off

and on, near the the bottom of both sides of my jaw, right below my ears. I

never had any swelling. A dentist told me the soreness was from a mild case of

TMJ. I never thought to mention it to my endocronologist b/c I never made a

link to the RAI treatment until I started reading the recent emails. Anyone had

any problems where the salivary glands just get sore, but not swollen? Could

that be the source of my problem rather than TMJ? Where exactly are you feeling

the pain in your jaw? Thanks for your insight.

[Guest guest]

Hi , I have had MILD salivary gland problems the last year--2 or 3

times. Anyway, tender, sore, but little to no swelling. Usually I find the

problem if I lay down on the affected side, or if I open my mouth wide( my itty

bitty mouth Heehee). I remember one time the soreness was below my ear,

another time it was, kind of, under my cheek bone, I think the other time it was

either under my ear or under my jay. Sorry, I have a mind like a sieve. Also,

the site of the problem is quite noticeable. In other words, it's a tender

" spot " , not generalized soreness. Did you have soreness on

both sides at the same time? If so, I don't know how common that is--mine has

always been on one side at a time. And if it is on both sides at the same time,

that may be more indicative of a TMJ problem. Hope this helps, rather than

making it more confusing. Best Wishes

lindalee@...

dx 12-96 follicular w/ bone mets

4 RAI= 840mCi 300mcg Synthroid

HPTH

Pgh., Pa

" Schnedar, " wrote:

> I had a 150 mc of RAI in 1994. In the years since then, I have had soreness

off and on, near the the bottom of both sides of my jaw, right below my ears. I

never had any swelling. A dentist told me the soreness was from a mild case of

TMJ. I never thought to mention it to my endocronologist b/c I never made a

link to the RAI treatment until I started reading the recent emails. Anyone had

any problems where the salivary glands just get sore, but not swollen? Could

that be the source of my problem rather than TMJ? Where exactly are you feeling

the pain in your jaw? Thanks for your insight.

>

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