The THYROID Thread

[luvmarypoppins]

I am SO happy that you can go tomm. Micayla. Wishing you all the best.

 

[mrsklamc]

200 was my dose this time. Feel bad bexause my family keeps calling and they mean well but I am Not up to talking on the phone and they just don't understand.

 

[mrsklamc]

Ok WOW! my saliva glands are freaking out already for the first time in a long time and i just had my dose an hour and half ago!!!! Anyone else have that happen?!?! (maybe that's where the residual tissue is?)

Also noted a headline that Jennifer Grey was treated for thyroid cancer, if that's of interest to anyone.

 

[Christine]

Ok WOW! my saliva glands are freaking out already for the first time in a long time and i just had my dose an hour and half ago!!!! Anyone else have that happen?!?! (maybe that's where the residual tissue is?)

Also noted a headline that Jennifer Grey was treated for thyroid cancer, if that's of interest to anyone.

Nah, you don't have residual tissue there. It's just getting into REAL good. Just make sure to keep eating and drinking so you can keep them working. You don't have to go overboard with sour stuff but just keep the saliva flowing.

 

[mrsklamc]

Nah, you don't have residual tissue there. It's just getting into REAL good. Just make sure to keep eating and drinking so you can keep them working. You don't have to go overboard with sour stuff but just keep the saliva flowing.

OK good to know. I was also glad they upped the dosage- one thing I read on Dr.Ain's board he mentioned was people using repetitive low dosage and then it not working. Thanks for encouraging me to check that out.

 

[luvmarypoppins]

Glad to hear things are rolling right along for you Micayla. Hmm, what do you and I have in common now, well 200 mci of course. (sorry my cancer humor is strange at times).

I would forget lemon drops and go for some jolly ranchers

Can you text your family if you dont feel like talking?

That 200 should knock the crap out of your cancer. My biggest problem was with the digestive issues, as christine posted, the radiation gastritis etc.I also just didnt feel too hungry all week.

Hang in there, you are doing great!!

 

[mrsklamc]

Glad to hear things are rolling right along for you Micayla. Hmm, what do you and I have in common now, well 200 mci of course. (sorry my cancer humor is strange at times).

I would forget lemon drops and go for some jolly ranchers

Can you text your family if you dont feel like talking?

That 200 should knock the crap out of your cancer. My biggest problem was with the digestive issues, as christine posted, the radiation gastritis etc.I also just didnt feel too hungry all week.

Hang in there, you are doing great!!

Funny you should mention- I was so sick of lemon drops after last time that I did go straight to Jolly Ranchers. I learned last night on Dr.Ain's website that he would have started with 200 mci for cancer with my particular spread,and also that according to him I should never have had an iodine CT scan as part of the diagnosis process from my GP. Oh well, I guess. Coulda, woulda, shoulda.

I'm either letting DH talk to family, or texting them, with the exception of my grandma- I texted my sister and asked her to call grandma.

They did make me sign something acknowledging that I knew this might not get rid of all thyroid tissue. They also verbally went over precautions and made me sign them no less than 3 separate times. I sorta preferred the other facility- but then I remembered that what I really preferred at this point was to GET IT OVERWITH. Follow up scan is Friday at 8 AM. No drugs or going off the LID until after that- which is a pity because Dr.Ain also doesn't feel that's necessary, but what can you do? Overall I like my dr. a lot and I was lucky to get in to see her so I better do what she says.

 

[luvmarypoppins]

I my endo too. But there is no way she decides about radiation etc. Only the radiation oncologist does that here.

My endo does the blood tests and orders the sono etc.

Here on the cancer team, everyone has a well defined role. I also picked this endo because she does the fine needle biopsies herself so I would not have the surgeon have to do it, but I know he would do it too.

And speaking of endos..I made my blood test for this tues, before my stomach surgeon visit and depending if he wants to do surgery or not I will see the endo the next week (the surgeon would only operate on me on a thurs. and that is when I have the endo visit. Oh well, we will see what happens. Never a dull moment.

My gp is a clueless dope. I dont know why I go to this guy. He didnt even know to refer me to the univ. hosp. I had to do all the research, calling etc myself. There really isint much choice of decent gp's around here.

I guess I could go on and on...well my dh is away in New Zealand right now and he is coming back mon. I am dealing with the non hurricaine here and he was dealing with the 7.5 earthquake 300 miles away. Both are amouting to a bunch of nothing so far.

So if you still have to do the lid, I would probably stick to stuff like mashed potatoes, the chicken soup with no yolks etc, roast chicken, nothing spicy for sure.

Hang in there!! Blessings to you always. My prayers are with you.

 

[Christine]

Funny you should mention- I was so sick of lemon drops after last time that I did go straight to Jolly Ranchers. I learned last night on Dr.Ain's website that he would have started with 200 mci for cancer with my particular spread,and also that according to him I should never have had an iodine CT scan as part of the diagnosis process from my GP. Oh well, I guess. Coulda, woulda, shoulda.

I'm either letting DH talk to family, or texting them, with the exception of my grandma- I texted my sister and asked her to call grandma.

They did make me sign something acknowledging that I knew this might not get rid of all thyroid tissue. They also verbally went over precautions and made me sign them no less than 3 separate times. I sorta preferred the other facility- but then I remembered that what I really preferred at this point was to GET IT OVERWITH. Follow up scan is Friday at 8 AM. No drugs or going off the LID until after that- which is a pity because Dr.Ain also doesn't feel that's necessary, but what can you do? Overall I like my dr. a lot and I was lucky to get in to see her so I better do what she says.

Geez, I didn't realize that about the CT scan--that you had one. I can't remember where I read this (probably Dr. Ain) but if he finds out you have had one, he will wait 6 months before he treats. I am BETTING this affected your uptake on the first treatment. While you can feel pissed about that, you can also take some comfort in that too. This time it will probably work.

I think I mentioned that my first few months of having thyroid cancer, I am convinced I was improperly treated which resulted in my successive large dose treatments. If I think about it, I get really mad. But I'm not too hard on myself because in 1995, there was barely the internet much less a thyroid cancer support group guiding me on the proper protocols.

Now I try to read up so that if I get into trouble again, I won't get mistreated.

I'm glad you are reading Dr. Ain's site. He really is one of THE top thyroid oncologists in the United States. I think it is super that he gives so much of his time. There are a few people on the administrative area of Thyca.org that don't care for him (or so I've heard). I think there were some past clashes as you can imagine but I think his information is spot on. I had the opportunity to hear him speak at one of the earlier thyroid cancer conventions (held in DC) and it was just so informative.

 

[mrsklamc]

Geez, I didn't realize that about the CT scan--that you had one. I can't remember where I read this (probably Dr. Ain) but if he finds out you have had one, he will wait 6 months before he treats. I am BETTING this affected your uptake on the first treatment. While you can feel pissed about that, you can also take some comfort in that too. This time it will probably work.

I think I mentioned that my first few months of having thyroid cancer, I am convinced I was improperly treated which resulted in my successive large dose treatments. If I think about it, I get really mad. But I'm not too hard on myself because in 1995, there was barely the internet much less a thyroid cancer support group guiding me on the proper protocols.

Now I try to read up so that if I get into trouble again, I won't get mistreated.

I'm glad you are reading Dr. Ain's site. He really is one of THE top thyroid oncologists in the United States. I think it is super that he gives so much of his time. There are a few people on the administrative area of Thyca.org that don't care for him (or so I've heard). I think there were some past clashes as you can imagine but I think his information is spot on. I had the opportunity to hear him speak at one of the earlier thyroid cancer conventions (held in DC) and it was just so informative.

Yeah he mentioned several times that, for example, he provided the original LID guidelines and they have since been, um, modified. I did have a contrast CT and as Dr.Ain said, I can't think why. Although, I suppose it makes my GP feel that he 'diagnosed' my cancer. I don't know if I told this story or not but he called with the CT results when I was driving to my first appt. with my awesome ENT and told me I had cancer, so I walk into my first appointment with her just bawling, and she says "Well THAT's premature. No one knows what's in there until we do a biopsy." And of course, it DID turn out to be cancer, but that was exactly what I needed to hear at the time.

 

[mrsklamc]

Wow.wow.wow. Those 40 mci make a huge amount of difference. Last time I didn't notice a loss of taste until I went off the LID. Guess what started already?

 

[luvmarypoppins]

O.K. I just read Dr. Akins stuff and I am "enlightened"

1. He really doesnt talk about columnar cell stuff. I wish he would have.

2. He did say about no less than 200 mci for the agressive variants, so I am about that.

3. Doesnt seem he is a big fan of thyrogen. Said its only for old people and kidney compromised pts. Well I think my kidneys are not too great. I dont even want to go there with that. He said with the diet and thyrogen "many" patients will have good results?.I followed that diet to the letter and then some.

4. Said lots about no iodine in tests etc. All I can say is thank God I held my ground when I had the bowel obstruction and was telling them no way to use betadine on me etc. And thank God I was so sick before the surgery that they didnt use dye with the ct scan I had before they rushed me into surgery.
Because 7 weeks after that I had the rai.

5. He does talk alot of tall cell (dischick, an interesting read for you).

Oh and I see the thy ca meeting is in Dallas in Oct. Since I used to live there I would love to go to that but with all the pain I am having in my stomach, doubt that would be possible. I have a friend there whos friend has follicular and has been to MD Anderson. I am going to ask if she is going. If she is I want to see if she can get some columnar cell info for me.

And lastly...september is thyroid cancer awareness month. My hospital is doing SQUAT!!. I am thinking of sending a little blurb to the hosp. president. Here goes the rebel!! I will also enlighten the endo of this when I see her too.

 

[Christine]

3. Doesnt seem he is a big fan of thyrogen. Said its only for old people and kidney compromised pts. Well I think my kidneys are not too great. I dont even want to go there with that. He said with the diet and thyrogen "many" patients will have good results?.I followed that diet to the letter and then some.

luvmarypoppins--

Are Dr. Ain's comments/thoughts on Thyrogen recent (I'll have to go in and search--I think it's difficult to read old posts on Yahoo Groups)? I know that shortly after Thyrogen made its debut, he and others preferred "old fashioned" Synthroid withdraw. I know, even still, study after study proves withdrawal to give the superior scan and treatment, but I *thought* the medical community had lightened up on it a bit. I think Dr. Ain's preference is that you do medicine withdraw on the first few scans/treatments as long as you are healthy. And THEN, when clear, switch over to Thyrogen. Is that what you got out of it?

 

[mrsklamc]

And lastly...september is thyroid cancer awareness month.

DH says- we're aware of thyroid cancer. Can we do something else now? Poor guy is so tired of this. I think it's worse for him than me cause he wants to 'fix it' so badly.

 

[luvmarypoppins]

Micayla - how are you feeling today?

Christine - I just read his one page thing with alot of q and a. This was not the yahoo group thing.

I did read an interesting study they did in france. Took 80 patients. Half med withdrawl and half thyrogen before rai. They used blood, urine and tissue samples. It showed that the rai stayed in the body longer with the withdrawl group, HOWEVER..it showed that the half life in the tissue remmnent was longer with the thyrogen group. My dh actually asked the rad. onc. something about the half life etc. etc. She said she couldnt answer him as she thinks in medical terms and my dh was asking something scientific (figure I am married to a scientific geek). He has worked with radiation before so hence his question. Oh well..I am sure other studies show other things. I guess I was interested in that. Also the thyca research grants are being given for research in medulllary (twice they thought I had that) and anaplastic. O.K. I know they need alot of help, hmm, what about the columnar cell?? I feel like a research orphan

My blood tests are tues. We will see what the numbers say.

 

[mrsklamc]

Micayla - how are you feeling today?

My blood tests are tues. We will see what the numbers say.

Am feeling somewhat better today; dry mouth and and bad taste in my mouth...hoping there's no permanent damage in that regard.

At least I can see the light at the end of the tunnel though. If I have tastebuds on Friday I know just what I'm having too...have you seen the Applebees commercials for provolone stuffed meatballs?

Is it your Thyroglobulin you are having tested Tuesday?

 

[luvmarypoppins]

Am feeling somewhat better today; dry mouth and and bad taste in my mouth...hoping there's no permanent damage in that regard.

At least I can see the light at the end of the tunnel though. If I have tastebuds on Friday I know just what I'm having too...have you seen the Applebees commercials for provolone stuffed meatballs?

Is it your Thyroglobulin you are having tested Tuesday?

According to the order I am suppose to have:
OH-Vit D
Comp. Metabolic Panel
Quantitative Thyroglobulin
Total T3
TSH
T4

I think I usually get those 6 every 3 months. I think its usually 3 tubes of blood. I always ask them to butterfly me as my veins are so bad.So its the blood test and then off to the surgeon today for me.

You are in the home stretch, hang in there. Go Micayla (O.K. you have to put up with my strange cancer humor, sorry)

 

[mrsklamc]

Believe me, I get having strange cancer humor too...but I don't even know what some of those tests are!! Wow!

Boy being hypo sure is weird. I slept practically all day yesterday...and today I had maybe as much energy as when this all started! So strange. Just a couple more days...I still have SOME sense of taste so I'm just hoping it hangs on.

 

[mrsklamc]

Oh, and LuvMaryPoppins...I was thinking...Dr.Ain may seem anti thyrogen to you but on the flip side- I could be wrong but I have been hypo for a long time now and part of me is thinking 'do they have the slightest clue what kind of long term damage they are doing to my body by doing this?' (I don't know either but I just wonder if it even occurs to them. Doesn't seem like it can be good for you.)

 

[luvmarypoppins]

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.

My blood tests went welll yest. I made sure to expressly ask for the tech to do a butterfly on me. I could tell she was having a hard time understanding my voice yest. It wasnt good. So we will see what the endo says next week. Last time she told dh there was no way she was lowering my synthroid. I am going to ask her what she thinks about my columnar cell. She did mention before she thought it would come back in 3 years. Wonder if she got any more patients. She goes to 2 hospitals. The other endos are just at the univ. hosp. only. There are 2 others who specialize in thyroid cancer.

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.

And lastly, my stomach surgeon visit went well enough yest. He wants to leave well enough alone for right now. But said sometimes people have to live with these chronic things, Um. no I am not going to do that. If it gets bad again he better figure out some way to fix it. He said he doesnt want to do a ct scan because he says sometimes you see things that you might not want to, make you look more etc. when maybe you shouldnt? O.K. I am seeing him again 2 days after we get back from disney in dec. So I guess its wait and see, but Praise God I am not having an operation now.