Salivary Issues After Rai

OK, so I had TT in 2/08 for contained pap carcinoma. I had RAI Wed and they said I had considerable thyroid tissue remaining from the surgery. This morning, I had so much phlegm I was vomiting and my neck/salivary glands are really swollen. I can't talk because it triggers my gag reflex.

I have taken anti inflamatories and am using the lemon drops constantly and pushing fluids. Am I missing anything? Anyone else had these types of symptoms?? I'm going nuts!

Interesting.  I have yet to have my RAI--it's scheduled for 6/4--but I was told that in order to go ahead with it as scheduled that they first had to have my blood work--to be done a few days in advance so they had time to look over it (ensuring TSH levels are high enough) and second once I had the initial scan on 6/3 with the I-123 (tracer) they would see how much thyroid tissue was left and if it was a considerable amount then I may have to have surgery again--even though I had a TT.  Since you had a considerable amount and they went ahead with the RAI I am not so sure what to say.  Maybe that is why you are so sick with the swelling and such?..... 

I know drinking plenty of fluids is supposed to be a must and it is okay to take things like tylenol for the pain or swelling but I am not so sure what would cause such a bad reaction.  I wish I could help with something in specifics that I have read that would help to make you feel better--physically and mentally--the only thing I can say is that unfortunately it seems as if some people come out of RAI with these kinds of side effects.  Please take heart--it will get better--we all have to believe that.

Thanks for responding. The way they did the procedure was I had a tracer dose Tues, WBS, and neck scan on Wed from which they determined the 131 dose for a few hours later (I ended up with 100). I am sure you're right that the swelling is related to the amount of tissue left. 

 

The swelling isn't getting worse so I am hopeful that the worst is over! Thanks for the kind words.

 

 

 

On 5/16/2008 jenneric2000 wrote:

Thanks for responding. The way they did the procedure was I had a tracer dose Tues, WBS, and neck scan on Wed from which they determined the 131 dose for a few hours later (I ended up with 100). I am sure you're right that the swelling is related to the amount of tissue left. 

 

The swelling isn't getting worse so I am hopeful that the worst is over! Thanks for the kind words.

 

 

I had the same problems that you described.  And it does get better.   Sometimes the doctor gives steroids----does your surgeon know about how bad the swelling is?  It's so scary and we are so miserable going through all this.  I had salivary gland swelling months after my RAI (150) and I looked like I had the mumps.  Once in awhile I still get it after a year.  I pushed on my gland from the outside and it would drain on the inside (gross, I know, but it helped).  I didn't realize there was an opening in our cheeks!  I ate lemons, limes (with sugar) and sour candies.  I still have problems eating crackers (that end up being a ball of dough in my mouth).......but it continues to improve.  Please let us know how you are!  Tara

 

Tara:

Thanks for you compassion. I am heartened to know that it will get better. I will call my doc tomorrow. I actually called the hospital endo on call this morning when I woke up b/c I was so anxious I was having trouble catching my breath. The doc was so unhelpful she actually said " please call back during normal business hours and our nurse will talk to you. there isn't anything more I can do for you." and then told me to continue with the lemon drops and water. The nurse at the practice has been horrid to deal with so I didn't even bother. If there's actually other medicinal options, maybe I'll call...

 

thanks, Jenn 

 

 

Jen.......please find another endo if you are not being treated well.  Sometimes doctors forget that we have HIRED them and they get paid very well----and that it is their obligation to attend to our problems.   I have had other cancers before (for the last 5 years) and I realized the first time I went into the oncologist's office and saw the room so crowded that I didn't have a chair to sit in---that I wasn't special at all.   SO MANY people have cancer and it's a LOT worse than mine because some are dying.  However, when I said to the oncologist 'I guess it's not a big deal compared to some of these people," he said "YES IT IS A BIG DEAL!"   That comment made me feel very understood by him.  YOU are important and if it takes 15 different doctors to help you---then go to 15 doctors.  Good luck!   Tara

Tara:

Very wise words. Trouble is I really like my endo, it is his staff and partners (such as the one that was on call) that are another story. I have struggled through it b/c when I am in the management phase I will see him and his lovely staff at the suburban office. All I have to do is endure the hospital component. But I do take to heart what you said. I came so close to walking away from the doc b/c of the support stuff...it may still come to that. 

Jen - Most doctors are not aware of how their staff operates.   They deal with patients and the office managers deal with staff.  I had to tell a doctor once that his nurse was consistently rude to me.   She didn't even know me and I never gave her any trouble, but she was rude to everyone.  I cut her slack for awhile and then decided that enough was enough!   I said I wasn't trying to get her fired or anything but that she had an attitude.  Apparently he talked to her, because she was at least friendly to me after that!   Let me know how you are.  Remember that no one is going to look out for us.  Doctors go home at the end of the day and don't think about us (and, to be fair, they would go crazy if they got too involved).  It's a job.  And their job is to honor the Hippocratic oath!  (I know I sound like a witch, but I"m really not!  I have learned the hard way to expect respect just as I give it).  You deserve to be treated well.  Tara

Tara:

Thanks again for your support. I totally agree. I wanted to "get through" the RAI and then have a talk with my endo about everything. He was so kind, I can't believe he'd not be compelled by the way his staff talks to his patients. Anyway, I am doing ok. My swelling has gone down considerably. I still sound froggy and still don't have success clearing my throat but it is getting better. And I get to have PIZZA tonight! Life is good, lol!

Thanks again, I definitely feel less alone know there's some where to post what's going on.

 

 

Just wanted to update...thank goodness the swelling is down. My voice is still raspy and still need to clear my throat but NOTHING like it was. I was really close to losing my mind there! Anyway, I wanted to wrap up the story for anyone else enduring weird swelling post-RAI. It will get better! For what it is worth, my taste-buds seem off. I think I read posts about that here. Just wanted to concur. I blame it on all those horrid lemonheads. Don't care if I ever have another! Wish me well on my WBS tomorrow--please let it have worked completely and that they're wrong I'll need another RAI!!!