The THYROID Thread

[Christine]

I asked my bff in Texas if her friend who has follicular was going to the thy ca annual meeting. She said she didnt know, but she said SHE would be willing to go for me and get me the info I wanted. I just about cried when I read that e mail. I couldnt believe she would do that for me.

One day we all need to meet up at a thyroid cancer convention!!!

 

[mrsklamc]

Micayla - are you actually going to have those meatballs on friday? My oldest ds usually goes to applebees but only when its half price appetizers etc.

I asked my bff in Texas if her friend who has follicular was going to the thy ca annual meeting. She said she didnt know, but she said SHE would be willing to go for me and get me the info I wanted. I just about cried when I read that e mail. I couldnt believe she would do that for me.

So I guess its wait and see, but Praise God I am not having an operation now.

I think I might wait on the meatballs and see what my sense of taste is like. I just had a banana and the best I could tell my dh was that it was like a 'diet banana.' He said 'What does that mean?' 'It's like a banana- but not totally. Like a banana-lite.' That's the best I can do....I'm finally losing a little weight though. Anyway, long story short- that entree is 10.99 so I really want to try it but I think I'll be waiting until I can taste it at least! I'm going to give biscuits and gravy a shot instead I think.

It's good to have good friends. That is so sweet that she would go for you, and I am glad you don't have to have another operation.

You talk about your strange cancer humor- they told me to wash everything from the first few days separately and I was just standing in front of my washer going 'Mom never taught me whether to use 'warm' or 'cold' water to get out radioactive material!'

 

[mrsklamc]

One day we all need to meet up at a thyroid cancer convention!!!

Yes- one day when my treatments stop eating all my vacation time!

 

[mrsklamc]

Christine, I know you mentioned it but I can't find it-did you say you took pepcid and something else for post RAI gastritis?

 

[luvmarypoppins]

Micayla - your laundry joke

O.K. Sending you a song (Think Annie here..tommorrow, tommorrow I love you tommorrow, you're only a day away!!

Wishing you all the best with your scan tomm.

 

[mrsklamc]

Micayla - your laundry joke

O.K. Sending you a song (Think Annie here..tommorrow, tommorrow I love you tommorrow, you're only a day away!!

Wishing you all the best with your scan tomm.

I'm not even sure what 'the best' is...I'm not sure if they want to be able to see it being knocked out, or simply not find any Tg the next time they do a withdrawal blood test, because it was a small amount of tissue that just wasn't showing up on the scan.

 

[Christine]

Christine, I know you mentioned it but I can't find it-did you say you took pepcid and something else for post RAI gastritis?

Pepcid in the morning and evening and liquid Gaviscon four times a day. Get the strongest Pepcid you can buy OTC.

 

[Christine]

I'm not even sure what 'the best' is...I'm not sure if they want to be able to see it being knocked out, or simply not find any Tg the next time they do a withdrawal blood test, because it was a small amount of tissue that just wasn't showing up on the scan.

My opinion--it would be great if they could see something on that scan.

 

[mrsklamc]

My opinion--it would be great if they could see something on that scan.

That's DH's opinion too- course he doesn't have nearly your expertise.

Feels good to be back on meds- but I'm not feeling better almost instantly like last time, since I was SO hypo. They said to take both cytomel AND synthroid for 2 weeks. A dear friend made me chicken alfredo and we stopped by her house to pick it up and I walked in and right back out- my muscles were SO mad at me. Thanks everyone for being here and being such a great virtual support group! It helps so much to have folks who understand- even though the journey is different for everyone!

 

[Christine]

They said to take both cytomel AND synthroid for 2 weeks.

That's what I always did because my TSH was always well over 100 when I scanned. I'm a fast riser.

 

[mrsklamc]

Ok so I got news back on my scan...Endo called, the first radiologist thought that some on the anterior scans indicated possible micro-metastases in my lungs. Endo disagrees, and consulted another radiologist who doubts that as well; although endo says even if that is what it is, recommended treatment would be 200 mci, which I already had. She's scheduling a Spect scan to be sure. She says metastases in the lungs would be very rare but the longer I do this the less 'rare' means to me.

But they see no residual tissue in the neck so I don't know what it means if they don't see this in my lungs on the spect scan?Does that mean I have iodine resistant tissue in my neck?

 

[Christine]

Ok so I got news back on my scan...Endo called, the first radiologist thought that some on the anterior scans indicated possible micro-metastases in my lungs. Endo disagrees, and consulted another radiologist who doubts that as well; although endo says even if that is what it is, recommended treatment would be 200 mci, which I already had. She's scheduling a Spect scan to be sure. She says metastases in the lungs would be very rare but the longer I do this the less 'rare' means to me.

But they see no residual tissue in the neck so I don't know what it means if they don't see this in my lungs on the spect scan?Does that mean I have iodine resistant tissue in my neck?

Well, I've been wondering about you!!!

What is a Spect scan? I do know someone who had it in the lungs and was treated a few times with 200 mci, so you are correct that, if it is there, you are on the right track.

I would say that if the lungs are ruled out and nothing shows up, it is is either soooooo soooooooo small in the lymph nodes as not to be seen or it is resistant to RAI. I think even if it is very small but takes up iodine, it will be seen with the high dose treatment.

I will be very interested to hear what your endo has to say when everything is in.

I hope you are starting to feel better these days...

 

[mrsklamc]

I am feeling much better but excited for my tastebuds to grow back!

This is everything I know about a spect scan:
http://www.mayoclinic.com/health/spect-scan/MY00233

It looks like this will tell them, for sure, whether it's in my lungs, or not. What do they do if it is iodine resistant? Wait til they can see it and then do targeted radiation?

 

[Christine]

I am feeling much better but excited for my tastebuds to grow back!

This is everything I know about a spect scan:
http://www.mayoclinic.com/health/spect-scan/MY00233

It looks like this will tell them, for sure, whether it's in my lungs, or not. What do they do if it is iodine resistant? Wait til they can see it and then do targeted radiation?

It sounds like that 3-D scan of the heart that Oprah and Gayle had a few years ago.

I guess if you are iodine resistant they do have to wait to find it and then go after it by other means.

Have you read any more on Dr. Ain's Yahoo group's board. I wonder if any of the iodine-resistant patients have posted their treatments? The board is a few years old so it would probably take some time to go through them.

 

[luvmarypoppins]

Micayla

Sorry to hear about your little "bump" in the road on the journey.

That spect test sounds pretty definitive, so its good to see your endo is on top of things. When are you having it?

Sending you lots of prayers, good thoughts and wishes.

Hang in there...and did you have the meatballs yet? I saw an add for them and thought of you

 

[luvmarypoppins]

Yest. I went to the endo. I also got a resident since its affiliated with the teaching univ. hosp. She was sweet and nice as well. Good personality to handle all us thyroid ladies.

The endo said my blood tests were good so PTL!! But the bone scan was not good and she wants me to have an iv infusion of reclast. Also my bp was not good, so she is upping the dose of that med, and then she wants me to see a cardiologist because of the synthroid levels so high and also my family history, and then she wants a neck ultrasound. I walked out of there with so many papers etc. my head was spinning. Glad dh was with me.

I also asked about getting a copy of my pathology report. Finally did. Yeah!! I think she mis stated something at first. The thyroid tumor itself was 12 cm and then the tumor I had on the L side of my neck was another 5 cm itself. Wowsa thats a whole lotta cancer for sure!!

Now she wants me on a 6 month sono schedule, 4 month blood test and 4 months of seeing her, it was originally 6 months seeing her and now she is switching it back to more. I also see the rad. onc. in nov.

 

[mrsklamc]

Sorry, I didn't see your post earlier! Had the spect scan Wednesday...haven't heard anything yet.

Haven't had the meatballs yet- still no real sense of taste. Oh well. It seems to be good for the number on the scale!

I am glad you have good folks taking care of you!

Christine- I haven't been back on Dr.Ain's board very much- I am waiting to see what they say so I can narrow down the search terms. LOTS of info there!

 

[Christine]

I was just reading the latest issue of Self magazine last night. They interviewed Sophia Vergara who plays Gloria on Modern Family and she said that she had thyroid cancer many years ago. Interesting! You certainly cannot see HER scar!

 

[mrsklamc]

So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!

I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago? But I will take good news as I get it!

 

[Christine]

So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!

I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago? But I will take good news as I get it!

I think that's great news. So your NEXT round of testing (a year?) will give you some more definitive answers.

Now just sit back and enjoy the next year!