The THYROID Thread - Page 114 - The DIS Discussion Forums

kimmie · 10-27-2011, 06:28 PM

Quote:

Originally Posted by Christine

kimmie,

You should read this. It is from Dr. Kenneth Ain, one of the leading thyroid cancer specialists in the U.S. They have long advised not to use candies after treatment:

OK Christine...Your just no fun....

Seriously I will leave the candy at home

luvmarypoppins · 10-27-2011, 07:04 PM

Well think of it as a post Halloween treat

kimmie · 10-27-2011, 07:37 PM

Quote:

Originally Posted by luvmarypoppins

Well think of it as a post Halloween treat

Christine · 10-28-2011, 05:40 AM

Quote:

Originally Posted by luvmarypoppins

Thanks for that insight Christine.

I really didnt eat the lemon candy that much either, It was making me nauseous but my salivary glands are really damaged anyway probably due to the high dose.

Just curious: Is there an article about the tear duct damage, since mine of course are damaged and I have to have the surgery etc.

And after my upcoming infusions, dr. visits etc, it will be interesting to see what they say about my issues and relationship to the thy ca.

I went nuts on the lemon drops my first RAI treatment and did get some salivary gland damage. Fortunately it was temporary. I also had a blood sugar crisis in the hospital which they suspect was due to be severely hypothyroid and eating too many candies. Second treatement I did nothing but eat some grapes every hour or so which sort of "gently" got my salivary gland to excrete. Probably didn't even need that seeing that study.

Yes, there is an article on the tear duct gland damage. I'll have go back tonight and find it (shhhh, I'm at work now

) but it was brief and basically described your issue.

mrsklamc · 10-28-2011, 07:18 AM

My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)

Christine · 10-28-2011, 09:39 AM

Quote:

Originally Posted by mrsklamc

My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)

Exact same situation for me.

luvmarypoppins · 10-28-2011, 12:45 PM

Quote:

Originally Posted by mrsklamc

My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)

Well Micayla, that is very interesting to know, as I know that was your 200 dose. Gosh, more trouble over a bunch of candy for me

I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.

And next years Thyca. conference is going to be in Chicago I think. Well its centrally located in the US. Of course I wish it would be more east coast etc. But considereing they only had that one 30 min. session in Dallas on all the rare variants, I just wonder what info I could get out of it.

I am going to see if my friend in Dallas who's friend goes to MD Anderson could maybe ask a question for me etc. sometime. I feel bad asking as she has follicular that has spread to her bones and is on a morphine thing which she is supoposedly getting removed and she also had the tear duct surgery. I dont think she can have any more rai, I think she had the max or is almost at the max. I e mailed her once so I will have to see. I guess I feel bad dumping my probelms on someone else who already has their own, KWIM?

One month from today I will be in Disney

. No tests etc. for me. But I think I am suppose to get some blood test soon from the regular gp to check my B12 level among other things, I need to check the date.

mrsklamc · 10-28-2011, 01:31 PM

Quote:

Originally Posted by luvmarypoppins

I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.

My dentist gives me a prescription toothpaste now, it's called prevident and I use a version specifically for dry mouth. It seems to have helped.

Christine · 10-28-2011, 03:42 PM

Quote:

Originally Posted by luvmarypoppins

Well Micayla, that is very interesting to know, as I know that was your 200 dose. Gosh, more trouble over a bunch of candy for me

I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.

And next years Thyca. conference is going to be in Chicago I think. Well its centrally located in the US. Of course I wish it would be more east coast etc. But considereing they only had that one 30 min. session in Dallas on all the rare variants, I just wonder what info I could get out of it.

I am going to see if my friend in Dallas who's friend goes to MD Anderson could maybe ask a question for me etc. sometime. I feel bad asking as she has follicular that has spread to her bones and is on a morphine thing which she is supoposedly getting removed and she also had the tear duct surgery. I dont think she can have any more rai, I think she had the max or is almost at the max. I e mailed her once so I will have to see. I guess I feel bad dumping my probelms on someone else who already has their own, KWIM?

One month from today I will be in Disney

. No tests etc. for me. But I think I am suppose to get some blood test soon from the regular gp to check my B12 level among other things, I need to check the date.

The first one or two conferences were on the east coast (right in DC) and I went to them. VERY, VERY informative but not sure I'd travel for one but that's just me. From what I remember, it was very easy to put your questions to a "top doc" and that was nice, especially for folks coming from areas without good access to specialists. I keep hoping they would have another DC one but they haven't.

Although, I've never been to Chicago and am always looking for a reason because I hear you can get some good pizza there!!!!

kimmie · 10-31-2011, 06:02 PM

OK everybody tomorrow I am going to the hospital for my RAI.

Wish me luck!

Is there anything I am forgetting?

WDWDancer · 10-31-2011, 06:46 PM

Good Luck Kimmie - let us know how it goes, enjoy the "you" time

I am still trying to decide on the RAI - I have gotten a couple different opinions from different doctors. I had my labs drawn last week and am waiting on those results, a Thyroid Ultrasound and PET scanned scheduled in 2 wks...sigh...we'll see how that all goes.

kimmie · 10-31-2011, 07:12 PM

Quote:

Originally Posted by WDWDancer

Good Luck Kimmie - let us know how it goes, enjoy the "you" time

I am still trying to decide on the RAI - I have gotten a couple different opinions from different doctors. I had my labs drawn last week and am waiting on those results, a Thyroid Ultrasound and PET scanned scheduled in 2 wks...sigh...we'll see how that all goes.

Thanks WDWDancer!
Hope everything goes well for you!

I am not really an "alone" kinda girl...so I will probably drive myself crazy..

luvmarypoppins · 10-31-2011, 07:47 PM

kimmie - wishing you all the best tomm. I know you will do well. You are getting half the dose I had.

I am an alone person. I dont have a car and I dont work so I like it peaceful and quiet and my dh travels but that is getting less, but I have my 3 ds who are always in and out etc.

Just think, no cooking for you for a day, so enjoy it. I watched aot of tv. I honestly felt so nauseous that I didnt feel like doing anything, and they were always pushing the drinking water stuff to me.

They go in and out very fast. Make sure they have booties and gloves on and that your food is on disposable stuff.

The highlinght will be when they come in to take your temp and blood pressure, and when they geiger counter you

WDW dancer - I hope your testing will give you the answers you need to make informed decision.

Does the PET scan have any iodine? I had it done before I had my surgery and then the rai was almost 5 months later (I had to wait due to my coma and bowel obstruction issues etc. etc.

mrsklamc · 11-01-2011, 09:45 AM

Good luck! It's really not too bad. (though I went home after both my doses so I didn't have to be cooped up in the hospital.)

kimmie · 11-03-2011, 10:52 AM

Ok everyone I am home! It wasn't too bad, but then again I do not like being by myself too much. I still feel a bit of a headache and upset stomach. I have started on synthroid ((levothyroxine) 100 mcg. I understand it will take some time for it to build up in my body?

I am trying to stay in my room as much as possible. DH is away on business and Dd25 working and Dd17 at school/work. I was mad this morning when I came down and no food around! Not even coffee made for me! Milk was gone too! GRRRRH! Just a small meltdown! Someone needs to go grocery shopping. I am craving fresh fruit!!

\I am wearing latex gloves when I go downstairs and try not to touch anything, but its hard to do.

Oh well...atleast I am back on the computer.

oh yea.. nothing really tastes good anyway! What did it do to my tastebuds?

10-31-2011, 06:02 PM	#1705
kimmie Sometimes I have senior moments ya know The TF's are busy people and we are restricting posters to a one tag maximum :) Join Date: May 2000 Location: Illinois Posts: 920	OK everybody tomorrow I am going to the hospital for my RAI. Wish me luck! Is there anything I am forgetting? __________________ Kimmie

10-31-2011, 06:46 PM	#1706
WDWDancer Recruiting Mouse Join Date: Aug 2006 Location: on the dance floor Posts: 188	Good Luck Kimmie - let us know how it goes, enjoy the "you" time I am still trying to decide on the RAI - I have gotten a couple different opinions from different doctors. I had my labs drawn last week and am waiting on those results, a Thyroid Ultrasound and PET scanned scheduled in 2 wks...sigh...we'll see how that all goes. __________________ "Remember a dream is a wish your heart makes!"

11-03-2011, 10:52 AM	#1710
kimmie Sometimes I have senior moments ya know The TF's are busy people and we are restricting posters to a one tag maximum :) Join Date: May 2000 Location: Illinois Posts: 920	Ok everyone I am home! It wasn't too bad, but then again I do not like being by myself too much. I still feel a bit of a headache and upset stomach. I have started on synthroid ((levothyroxine) 100 mcg. I understand it will take some time for it to build up in my body? I am trying to stay in my room as much as possible. DH is away on business and Dd25 working and Dd17 at school/work. I was mad this morning when I came down and no food around! Not even coffee made for me! Milk was gone too! GRRRRH! Just a small meltdown! Someone needs to go grocery shopping. I am craving fresh fruit!! \I am wearing latex gloves when I go downstairs and try not to touch anything, but its hard to do. Oh well...atleast I am back on the computer. oh yea.. nothing really tastes good anyway! What did it do to my tastebuds? __________________ Kimmie

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10-27-2011, 07:04 PM	#1697
luvmarypoppins I am debating whether to put a new one back on his O.K. who is the sista here right now? ((Hug)) Join Date: Aug 2003 Posts: 9,299	Well think of it as a post Halloween treat

10-28-2011, 07:18 AM	#1700
mrsklamc I apologize in advance, but what is a click clack? Join Date: Oct 2006 Location: Husker living in Hoosierland. Posts: 8,332	My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)

10-31-2011, 07:47 PM	#1708
luvmarypoppins I am debating whether to put a new one back on his O.K. who is the sista here right now? ((Hug)) Join Date: Aug 2003 Posts: 9,299	kimmie - wishing you all the best tomm. I know you will do well. You are getting half the dose I had. I am an alone person. I dont have a car and I dont work so I like it peaceful and quiet and my dh travels but that is getting less, but I have my 3 ds who are always in and out etc. Just think, no cooking for you for a day, so enjoy it. I watched aot of tv. I honestly felt so nauseous that I didnt feel like doing anything, and they were always pushing the drinking water stuff to me. They go in and out very fast. Make sure they have booties and gloves on and that your food is on disposable stuff. The highlinght will be when they come in to take your temp and blood pressure, and when they geiger counter you WDW dancer - I hope your testing will give you the answers you need to make informed decision. Does the PET scan have any iodine? I had it done before I had my surgery and then the rai was almost 5 months later (I had to wait due to my coma and bowel obstruction issues etc. etc.

11-01-2011, 09:45 AM	#1709
mrsklamc I apologize in advance, but what is a click clack? Join Date: Oct 2006 Location: Husker living in Hoosierland. Posts: 8,332	Good luck! It's really not too bad. (though I went home after both my doses so I didn't have to be cooped up in the hospital.)