The THYROID Thread

[Christine]

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]

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]

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]

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]

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

Wish me luck!

Is there anything I am forgetting?

 

[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.

 

[kimmie]

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]

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]

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]

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?

 

[luvmarypoppins]

kimmie - glad you are home and have survived!!. I think I would be upset with no groceries around after all you went through too., Well maybe text your one of your dds and give them a list etc.

I would feel better when my ds were at college too as I wanted to be away from them asap during that time.

I felt nauseous alot too so didnt really feel like eating alot and adding to that the radiation gastritis and diarrhea etc.

My taste buds were not really affected. I know Micayla can comment experiences to you. I think she had some issues post rai etc.

I felt better when I wore the gloves too and I was only on the computer when the ds were at college as the computer was in the room where they stayed most of the time away from me etc.

My dh was in the same living room with me, but we have a huge one and he was always about 10 feet away in his own chair etc. Thats where he slept too for the week.

Wishing you all the best. You should start to feel better slowly each day.

 

[kimmie]

Yes luvmasrypoppins I am getting a list together for Dd to grocery shop. I am just craving real fruits and veggies. My cousin sent a honeybaked ham platter. Oh my how fantastic! I had fresh veggies cut up with it.

I am having gastro issues and just feeling under the weather. I know each day I will get stronger.

Dh will be home late tomorrow night and my birthday is Saturday so I have requested a big bowl of pasta and a cupcake!

I will be back at the radiology oncologist next Wednesday for measurements and hopefully can get back into the family again! lol

 

[Christine]

kimmie,

Glad your done! The nausea is quite common and is due to the RAI causing irritation to the stomach lining (gastritis). It will gradually heal on it's own but it can take a week. My endo prescribed an Pepcid AC in the morning and a Pepcid AC in the evening as well as liquid Gaviscon during the day. You want to keep the acid levels down while your stomach is irritated.

I had "tongue" issues with both of my high dose (150 mci) RAI treatments. I lost my taste and then it evolved into feeling like I had these little "cuts" all over my tongue. I expected to see blisters all over it but when I looked at it in the mirror it was normal. I believe I remember the taste/tongue issues lasting about 10 days.

The RAI tends to make you feel a bit tired (besides being hypo). I remember going into the hospital and feeling pretty bad anyway (my TSH was at 140) and then the morning after the RAI I felt ten times worse. It goes away in a few days though.

Hang in there, you're on the upside of things now.

 

[luvmarypoppins]

So did anyone see the little blerb about Sofia Vergara. I think its from Hugffngton but it was on the aol news today.

I wish she would have said a little more etc. but I guess any press thy ca gets is a step in the right direction.

Someone commented well if the thyroid cancer needs a spokesperson then I hope its you Sofia. Hmm, with what she said already, I just dont know. I know Catherine Bell also had a little article and it was really not that great too. Just she had it, yes you can have kids etc., she was preg. with #2 at the time.

Just wishing if they say something I wish it would be not so generalized etc. Just like it was yeah I had it, yeah I am ok etc. Hmm, wish I would be ok etc.

And on the I am not ok thing, blood work tomm. Infusion on Monday. That is the reg. dr. bloodwork. I am most concerned with theB12 level and anything that indicates why I am so tired, he is not doing any thyroid stuff though.

Kimmie a little early to you tomm. too. (Its also ds#3 b day tomm. He is gong to NYC today with some friends but has to work tomm. I might make him a cake, we shall see.

 

[kimmie]

I did not see anything about Sophia! Wow she would be a great spokesperson for the "neck check". I am shouting it from the rooftops in my community.

Thank you for the birthday wishes too! I wish I could be in NYC celebrating like your son! I have requested a big bowl of pasta and cupcake from the family but I just haven't felt like eating much and everything tastes off to me. I feel like its morning sickness in a way and I hated that. I am eating Tums and drinking water. The acids aren't bad at all I think it just makes me feel better. I am on my second day of synthroid and hoping to feel better each day. I am washing my clothes (seperate) and trying to keep busy in my room
My girls have been great. They sit at my door and talk with me while I am on the bed.
On top of it all my Mom is going for an angiogram on Monday. She says she can't wait until I am better...so my cousin is going to take her. I am the only one she has nearby and I am 1 1/2hrs from her. Life is just crazy! (well she is too)!

Thanks for listening and all the good wishes!

\Good luck luvmarypoppins!

 

[mrsklamc]

Kimmie-

My tastebuds were totally useless from about one week out from radiation until about 3 weeks out. I had to stay on the diet for a week after RAI too so it was kind of a sick joke- congrats, you can eat what you want! (you just can't taste it!)

I did have one person tell me fish oil would help them come back sooner. I don't know if it did help or not.

 

[luvmarypoppins]

kimmie - if your dd's are away during the day you wouldnt have to stay in your room, (I was in the ilving room by myself during the day in my own chair that no one ever sits in but me etc)

and if you have an area where you can be the required feet away from them it would be ok too.

 

[Christine]

I have seen Sofia Vergara talk about thyroid cancer in several places; however, it's never more than a passing notice. I don't think that is her fault. I'm sure the magazines and TV shows dictate how much she can talk about it and the probably don't want to devote too much time to it. They just use it as a "defining moment in her life" kind of thing. I also think she had it a long time ago--I think I remember her saying she was 19 or something and now she's pushing 40.

I do think Catherine Bell actually was some sort of spokesperson for a bit. But let's face it--even with the big increases in thyroid cancer cases, it is still small potatoes (and much less lethal) than something like breast cancer. So I sort of understand why the media devotes very little time to it. It's highly curable, even in later stages, and still deemed somewhat rare.

 

[kimmie]

kimmie - if your dd's are away during the day you wouldnt have to stay in your room, (I was in the ilving room by myself during the day in my own chair that no one ever sits in but me etc)

and if you have an area where you can be the required feet away from them it would be ok too.

I know I probably should drag myself downstairs for a "change", but maybe I am too lazy!

Its supposed to be 60 degrees here tomorrow! Unusual for northern Illinois!

I think a trip outside tomorrow will be perfect!

 

[luvmarypoppins]

kimmie - how are you feeling today. Hope better each day and that you had a good b day too!

Well I am back from my reclast infusion. Now just waiting for the flu like symptoms and possible fever over the next few days.

Didnt know my endo was there as I was only scheduled for the infusion. She spent so much time with me. Gosh I just that dr!. She is so sweet and always listens etc. She is changing my bp med, so we will see how that works out. I need to go for a bp check in about 2 weeks. I also ran my gyn symptoms by her and she said it was def. not normal and she would not be surprised if the dr. did a biopsy. I said, you know I really dont want to hear the word cancer again. She just looked at me. Hmm.