The THYROID Thread

[luvmarypoppins]

Micayla - have you had the thyrogen yet? I heard you are having terrible snow out there. Wishing you all the best.

Christine - how is your back?

Cassie - hope the endo visit works out for you

dischick - how are you feeling and the voice? Getting ready for our tues/wed snow. I am glad its suppose to start later on. I hate winter and snow.

Well I think I will get the blood test in about 2 weeks. I have to see when my endo visit is. The antibiotic seems to be working as I dont have the sharp stabbing pain in my stomach. 20 days from today is my 2 year cancerversary. I count it as the day of my surgery. And speaking of the surgeon who almost killed me. I see he is selling his house. dischick you will appreciate this NY price...589,000! Wowsa. I wonder if he is moving. If so, then I think I wil have to have the surgeon who saved my life do any other surgery on me. We will see.

Take care everyone. Blessings always.

 

[mrsklamc]

I dont think the snow here is too bad.. But then I haven't looked outside. I think some is coming tonight. I have my first injection this morning so hopefully it's not too hard to get there tomorrow for the second one.

 

[luvmarypoppins]

Micayla - how are you doing? I didnt get the headache right away, more like a delayed reaction, somewhere between 5-7 pm. It knocked my socks off etc.

Take care.

Just wondering if your test turns out well, will your dr. consider doing your next scan with thyrogen instead of the med. withdrawl?

Wishing you all the best.

 

[Christine]

Christine - how is your back?

Thanks for asking. The back is s-l-o-w-l-y getting better. At least I don't feel like I have the knife sticking into my left sacroilieum! I can at least put my socks on without too much pain!

Getting old and out of shape stinks.

 

[mrsklamc]

Micayla - how are you doing? I didnt get the headache right away, more like a delayed reaction, somewhere between 5-7 pm. It knocked my socks off etc.

Take care.

Just wondering if your test turns out well, will your dr. consider doing your next scan with thyrogen instead of the med. withdrawl?

Wishing you all the best.

So far so good; I am home from work by 5 so hopefully will be ok.

She says the latest data on the thyrogen is good so I think plans to use it from here out.

We are supposed to get a lot of snow tonight/tomorrow so I'm just hoping not to have trouble getting there for the shot.

How long did you feeling bad last? Leaving for Disney on Saturday.

 

[luvmarypoppins]

The 2nd shot was not as bad. (headache wise, but still felt a little queasy)

It stopped after the shots (ie, next day)

I know once the onc. nurse commented, this med is sure expensive, we usually dont use it for everyone (according to the hosp. website they do!!). I think she said it was like $800 a shot? I dont trust her though, but I am glad we have good ins. from dh, PTL.

Have a wonderful time in Disney World. You sure deserve it with all you have been through!! So where are you staying, where are you eating, please tell!!

 

[FormrCastMbr]

Hi All! I hope you do not mind that I post here and ask some questions.

I had my thyroid removed a month ago and the pathology report came back that I had traces of cancer in my thyroid and the 2 lymph nodes that they took out. We did not know it was cancerous since my last biopsy was 2 years ago and clean.

Long story short, I just moved from NJ to PA so I had to find a new endocrinologist (I have been dealing with multiple nodules and Graves for a few years) and in the meantime, I started having some medical issues and was recommended to see an endo and surgeon, at UPMC (Pittsburgh) and they both agreed to take out the thyroid.

So now, I am on the generic synthroid (the endo and surgeon were ok with this) and now I need to go for a thyroglobulin test and then RAI.

OK, so now I am babbling......sorry.

I guess my question is for those of you that have had the RAI, what did you do afterwards? My doctor said it is fine to be in the same house with the family (I have 2 children 12 and 2) but not in contact and the same room for several days. My husband is freaking out about not being around the kids...we just moved here so we have no family here but can have a couple family members come and help my husband if needed.

Please let me know your experience with RAI...it would be greatly appreciated! I have not read this entire thread but I will go back now...

Thank you!

 

[mrsklamc]

I don't have kids, so I didn't have to deal with that...
Off the top of my head, I almost think it would be easiest to have family come help, and go stay in a hotel if you can afford it. I'd be paranoid about exposing the kids though. But for comparison, I'm also paranoid about the radiation at the new airport scanners, now that I've dealt with cancer.

I think it would be easier for a 2 y.o. to grasp 'mom's not here' than 'mom's here but you can't be around her.

 

[FormrCastMbr]

I don't have kids, so I didn't have to deal with that...
Off the top of my head, I almost think it would be easiest to have family come help, and go stay in a hotel if you can afford it. I'd be paranoid about exposing the kids though. But for comparison, I'm also paranoid about the radiation at the new airport scanners, now that I've dealt with cancer.

I think it would be easier for a 2 y.o. to grasp 'mom's not here' than 'mom's here but you can't be around her.

Thank you for your feedback. I am paranoid too and yes the baby would be banging on the door if I was in the house and not paying attention to him.

I would go to a hotel but I think they do not think that is a good idea either. I am so confused!

 

[mrsklamc]

Many people go to hotels; radiation risk is much smaller for adults and its easier to isolate yourself. The challenge would be the diet as you can't just eat takeout.

 

[luvmarypoppins]

Lauren - do you know what your rai dose is going to be?

I have learned from our resident expert here, Christine, that if you are getting a very little dose the rules are totally different.

Our 3 ds are older teens/young adults so they knew the rules etc. I also stayed overnight in the hospital the lst night. My dose was 200 mci.

I am sure it will be hardest on the little one.

I did think about sending the family to a hotel and me staying in the house. My dh has worked with radiation in the past at work, so at the hosp. they were impressed with his knowledge of all of it etc.

I mostly stayed in the living room, dh kept his 10 feet away. The ds stayed in our family room except going out the door quickly past me. Dh slept on the couch all week.

We have 2 bathrooms so that helped too.

I could give you the full heavy duty tips if that is what you are having.

Less rai is a little different.

Wishing you all the best.

 

[FormrCastMbr]

Thank you very much! I believe I will be getting a small dose of 50 but when I get the thyroglobulin test back, they will confirm that. I wanted to send the family to a hotel, but they did not go for that! Oh how I would love to have the house to myself for even a day!

Has anyone had the cancer of the thyroid travel to the lymph nodes? Of course they tell you thyroid cancer is the most treatable but you hear the "C" word its a different story.

I am really paranoid since my brother just died of stomach cancer which I know is a totally different story.

Thank you again. I hope everyone is feeling good!

 

[mrsklamc]

Has anyone had the cancer of the thyroid travel to the lymph nodes?

Mine was in 7 of nine lymph nodes that they removed.

 

[mrsklamc]

! So where are you staying, where are you eating, please tell!!

We're staying off site, at Windsor Hills- My sister, her husband, their 5 kids, my mother, my aunt, DH, and I. Probably not too much in the way of interesting food either. Hopefully next trip in a few years will be DH, me, and one or more kiddos of our own, and then we'll stay onsite!

 

[FormrCastMbr]

Mine was in 7 of nine lymph nodes that they removed.

I have not read back but I hope you are feeling well. Thank you for the information you have given me.

We're staying off site

Have a great trip! I do not think we are going to WDW this year (unless I go for a quick food and wine weekend so I am getting my Disney fix through others. I just made an ADR for my sister at Bluezoo for this weekend. I have never been there but always wanted to go. My neice is doing a consulting job for Disney so my sister is going for a quick visit.

 

[Christine]

Hi Lauren,

When I had my first treatment, my son was 9 months old. My treatment was 30 mci and I was really given very little restrictions. I was told not to hold the baby and that 6 feet distance was good. At that dose, I was given no restrictions about utensils, washing hands etc. It was also 1995.

In 1996, I had 150 mci and had to stay over 2 nights. By the time I was released, based on the geiger counter results, anyone 4 feet away from me wasn't getting anything. Again, I was told I could bath my kids, get them dressed, etc. but no "hugging" which would bring them right up to my neck. After release from the hospital, I was given no home restrictions for anything else.

At 50 mci, you are going to be pretty safe, at close distance, within about 24 hours. After that, you will be fine for basic caregiving, just keep anyone away from your neck/chest area. If it's a higher dose, the timeframe will be a little bit longer.

I was told by a nuclear physician that the precautions are pretty much overkill; however, they do them anyone just to avoid any potential lawsuits.

 

[luvmarypoppins]

Micayla - your trip sounds great. Heah, you are going to Disney!! I think a big family group would be good. guess you have to figure out all the logistic stuff and does everyone agree on one plan or several etc?

Any headache?

Lauren - I am not your typical thyroid cancer patient. My tumor was huge they tell me 12.5 cm. It was crushing my trachea. I had 47 lymph nodes out (modified radical neck dissection). 6 hr. surgery I think 6 were positive and also one of the lymph nodes contained another tumor which they couldnt get a good pathology on as they said it was not thyroid cells?. Post surgery I had bleeding so another 2 hr operation and then at 4 am my jugular vein burst and I had 15 minutes to live, 3 more hours of surgery and an induced coma for 2 days. Lots of prayers that God heard and I am still here today, PTL.

Then thrown in is they told me I have a very rare and agressive variant - columnar cell. Even my rad. onc. cant seem to find much info on it. Out of about 150 thy. ca. patients last year I was the only one with this.

Everyone is different but I am glad to hear everyones stories.

Wishing you all the best.

 

[luvmarypoppins]

So did anyone see the article on the aol news today about the girl with thyroid cancer and the low iodine diet.

She describes the low iodine diet as culinary Groundhog Day

I saw her scar. It looks so good compared to what I have for sure.

She said she has to go on the lid every five years for testing., Christine, is this the norm??

Since I had the 2 clean scans I only get the thyrogen and blood test this year the rad. onc. said, so then I guess in 2 more years I get the lid and scan again??

The article also mentioned the movie Elf. It was funny as I loved watching that movie during my recovery. It always made me laugh!!

I also like her attitude about life is too short and I am eating whatever I want. That is my motto too!!

If you get some time..read it.

 

[mrsklamc]

So did anyone see the article on the aol news today about the girl with thyroid cancer and the low iodine diet.

She describes the low iodine diet as culinary Groundhog Day

I saw her scar. It looks so good compared to what I have for sure.

She said she has to go on the lid every five years for testing., Christine, is this the norm??

Since I had the 2 clean scans I only get the thyrogen and blood test this year the rad. onc. said, so then I guess in 2 more years I get the lid and scan again??

The article also mentioned the movie Elf. It was funny as I loved watching that movie during my recovery. It always made me laugh!!

I also like her attitude about life is too short and I am eating whatever I want. That is my motto too!!

If you get some time..read it.

I'd like to read it, but I'm not finding it..I searched at aolnews.com?

 

[luvmarypoppins]

I saw it when I was doing my aol mail

Its..

The Diet that Saved my Life by Heather Muse