Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Just for Fun > Coping and Compassion
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread
Old 06-25-2011, 07:58 AM   #1396
mrsklamc
I apologize in advance, but what is a click clack?
 
Join Date: Oct 2006
Location: Husker living in Hoosierland.
Posts: 9,444

Front page article on CNN.com about a civil rights leader with thyroid cancer:

http://www.cnn.com/2011/HEALTH/06/25...html?hpt=hp_c1

More awareness is always a good thing!
mrsklamc is offline   Reply With Quote
Old 06-26-2011, 10:58 AM   #1397
mrsklamc
I apologize in advance, but what is a click clack?
 
Join Date: Oct 2006
Location: Husker living in Hoosierland.
Posts: 9,444

I also ran across an article yesterday where a woman said her cat was having trouble with its thyroid and that made it urinate more frequently. Now, I've had a lot of trouble from my thyroid but that one is new on me!
mrsklamc is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 06-26-2011, 02:02 PM   #1398
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: 9,784

micayla -you can call me lmp or if you really want to call me something else, I guess Maryann is ok too. The breast cancer girls say either one depending. You can look at me on page 200 of that thread. pn the cb. Oh, I am the one with the neck dissection

I was reading that article. That poor lady has been through alot for sure. She is really a survivor and fighter in more ways than one. I felt bad about her having more rai and the spread etc. It reminded me when I was in the hosp. with the rai overnight. They quickly went in and out the room , scanned stuff with the gieger counter, wore special booties, disposable stethescope etc. I felt so bad when I read her family had to hold her hand with special gloves etc.

Well I am scheduling my sono and latest blood work for the next week or so. I think I go to the endo around July 11 and she likes everything to be done 2 weeks before the visit etc.

Dischick - anxious to hear how the wedding went and just curious if they told you not to be by pregnant people etc.Wishing you all the best tomm and praying you will get a 0 too and a clean scan.

Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.

Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc

Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.
luvmarypoppins is offline   Reply With Quote
Old 06-26-2011, 07:18 PM   #1399
mrsklamc
I apologize in advance, but what is a click clack?
 
Join Date: Oct 2006
Location: Husker living in Hoosierland.
Posts: 9,444

LMP- cause they are PRACTICING medicine...

Am I missing any reason this wouldn't work for the diet?:

http://nuttykitchen.com/2010/06/01/c...whipped-cream/
mrsklamc is offline   Reply With Quote
Old 06-26-2011, 10:24 PM   #1400
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: 9,784

Well I looked at that. It says dairy free. Does it contain carragean (sp?) because I know that is not allowed. It does look yummy and a good substitute if it meets all the requirements. Can you ask thyca. directly about it?

All I know is I am so glad I got to call that dietician when I was doing the diet lst time. I drove her nuts for sure! And then I found out my ins. would not cover it. So I sure got my $112.00 worth for sure. I got the initial one on one consultation then all the phone calls and my rad. onc. own personalized diet no no list and then they told me to go look at the thy ca cookbook too and that was frustrating looking at 2 lists because I couldnt have the cocoa powder that was listed in Christines wacky cake etc.

Again like in my previous post, I think hospitals should make a dietician available to you to go over this stuff regardless of whether your ins. pays or not. It should just be a level of acceptable care. Crap, I am sure they go over low salt diets with heart attack people, no sugar stuff for diabetics.

I think they shoud train all the dieticians on the lid. They knew how to cook it at my hosp because the dietician told me they had to teach them etc. In the hosp. I got oatmeal or fresh fruit, lunch was a salad and that was pushing it with some deli roast beef. I even asked the rad. onc, is this acceptable because its not on your list etc. I was wondering about the salt. Oh and they gave me no oil etc. For the dinner I had mashed potatoes, small chicken thigh and carrots and frresh fruit. So they knew what they were doing. Also like dischick said about the chef. I actually mentioned to the rad. onc. that it would be nice if they could cook us something at the hosp and we would pay for it etc. I asked even if there was a chef in the area who did this etc . because they told me there was a certain bakery by the hosp. who knew about the diet and made certain things etc.

There is a restraunt a few towns away owned by one of the ds former teachers. His son cooks and he was on the show "Chopped". I am sure he might be interested in something like this. I am not thinking of the money aspect of it, more of the way in being a mission to people. He is really religious.

I think we need all the help we can get for sure.
luvmarypoppins is offline   Reply With Quote
Old 06-27-2011, 02:37 PM   #1401
Christine
Would love to be able to sit on the couch for a few days, get a good book, and do NOTHING!
Considers the DIS as Bladder Training 101
 
Join Date: Aug 1999
Location: Northern Virginia
Posts: 23,479

Quote:
Originally Posted by luvmarypoppins View Post
Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.

Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc

Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.
I think there is no "standard" because there is no hard science. While, in theory, we know WHY we do the LID, there is no proven science really showing that it is as effective as not doing the diet. Many top thyroid doctors believe that using the LID provides for a more effective treatment/scan but it hasn't been proven. So some doctors just don't bother with it. It causes no harm, except mental anguish, on the patient so I'm not sure why all doctors don't embrace it.

As for the RAI guidance, I was once told my a nuclear physician that these precautions some patients are given are WAY over the top and not required, in his opinion. Again, there's no hard science stating that double flushing helps and many doctors think people are just nutso when it comes to radiation. The only consistent information I ever got on RAI that was agreed to by every nuclear physician I came in contact with was to keep children and pregnant women 8 feet away from your neck.
__________________
Christine

Vacation Home - Indian Creek - July 2012
Vacation Home - Terre Verde Resort - July 2009
Vacation Home - Terre Verde Resort - Easter 2007
Shades of Green - June 2005
Vistana Resort - May 01
Shades of Green - May 99
Shades of Green - Apr 97
CBR & Shades of Green - May 95
Christine is offline   Reply With Quote
Old 06-27-2011, 03:07 PM   #1402
mrsklamc
I apologize in advance, but what is a click clack?
 
Join Date: Oct 2006
Location: Husker living in Hoosierland.
Posts: 9,444

My personal thought on why they are so careful with the nuclear med stuff is that there are always people who think the rules don't apply to them, so they are EXTRA cautious as a buffer. No science there at all, just my opinion.
mrsklamc is offline   Reply With Quote
Old 06-27-2011, 06:03 PM   #1403
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: 9,784

My dh has worked with radiation before in his job and he talked with an expert at his job who originally did stuff in another country. My dh talked to the rad onc. and she said, I think medical and you think scientific.

But dh insisted I stay overnight in the hosp. Partly because he knew about the effects of the large dose and my medical stuff.

The onc. told me the hosp. was fined by the NRC? for nuclear stuff so they are always careful. Hmm, really? The one guy didnt wear the booties in the room with me, someone next door opened my door and that was not allowed. It had the radiation sign on it. They sent up my food one time on non disposable serving ware (that was suppose to be not allowed either). I had a big blue lidded barrel in my room to put everything in.

Can you only imagine what people do at home? I know there is a girl on you tube who was in the army in Germany and she said the quarantine is VERY strict there etc.

They had offered to stop by the house and pick up my garbage. I dont know why they said that? did they do that with everyone? Dh told them what he was doing etc. and they were fine with it. They said around here it can make the detector go off at the landfill etc?

I also read that in places like NYC they want to check into radiation rules after RAI because some people take public transportation etc. That sounds like fun, being next to a nice 200 rai person on a bus and them not telling you etc. They said they tell patients not to do this, but they do etc.
luvmarypoppins is offline   Reply With Quote
Old 06-29-2011, 01:31 PM   #1404
dischick4778
DIS Veteran
 
dischick4778's Avatar
 
Join Date: Sep 2004
Location: Queens, NY
Posts: 1,209

The wedding was wonderful. I did miss eating all the fun cocktail hour foods, but the salad and chicken the chef made me were tasty.

Today is day 3 and I'm getting anxious. I want Friday to be here, the scan to be clean, and to eat a nice juicy cheeseburger with fries that night. Is that too much to ask for? I have little patience for the diet this time around in case you didn't notice. I'm hungry and I lost 12 lbs, the whole thing is making me quite irritable.

The shots on day 1 and 2 did not bother me much at all. I felt tired but other than that I was fine. Just took the low rai about an hour ago and they told me not to pick up my son until Friday. They said he should not be near my neck.

Hope you're all doing well!
__________________
1986, offsite 1988, offsite 1996, Dixie Landings 1998, Coronado Springs 2001, Caribbean Beach Resort May 2002, Port Orleans French Nov. 2002, Old Key West Aug. 2003, Old Key West Nov. 2003, Old Key West Nov. 2004, Animal Kingdom Lodge Aug. 2005, Grand Californian Aug. 2005, Old Key West Nov. 2005, Boardwalk Villas Aug. 2006, Saratoga Springs Nov. 2006, Boardwalk Villas July 2007, Old Key West Nov. 2007, Beach Club Villas Nov. 2008, Boardwalk Villas Apr. 2009, All Star Music Aug. 2009, Old Key West June 2011, AKV Kidani Village July 2011, AKV Kidani Village


~Our Disney Family~
dischick4778 is offline   Reply With Quote
Old 06-29-2011, 04:37 PM   #1405
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: 9,784

Hang in there dischick! You are almost done. There is light at the end of the tunnel!! You can do this!!

I remember after my scan we went to a restraunt. I told the waitress, I am going to be ordering ALOT of food. I think I said, I am REALLY hungry.

I lost 10 lbs. the last time. The onc. nurse told me that is about the average they see. The lst time I lost 20 lbs.

Just curious if that is the only precautions they gave you, just not to pick up your son?
luvmarypoppins is offline   Reply With Quote
Old 06-29-2011, 06:49 PM   #1406
dischick4778
DIS Veteran
 
dischick4778's Avatar
 
Join Date: Sep 2004
Location: Queens, NY
Posts: 1,209

Thanks for the support! It's so hard, because I want to believe after Friday this will be over for a while. But then the Dr. says today "well that's what we're hoping for". Of course we all know that they could tell me they found more cancer, but why not be a little positive please. It has been an insane year, give me something to look forward to. Sheesh.

But this thread and the people here have been so helpful in dealing with this. So thank you!!

The Dr. today told me not to pick up my son and not to have him anywhere near my neck. I specifically asked if I should not sleep in the same bed as my husband and Dr. said the dose wasn't high enough to have any impact on DH. He did say not to hug any pregnant woman as well. But that was it.

When I had my treatment last year I was quarantined in my mom's house for the week but that was a pretty high dose. This dose is only 4.0 mci.
__________________
1986, offsite 1988, offsite 1996, Dixie Landings 1998, Coronado Springs 2001, Caribbean Beach Resort May 2002, Port Orleans French Nov. 2002, Old Key West Aug. 2003, Old Key West Nov. 2003, Old Key West Nov. 2004, Animal Kingdom Lodge Aug. 2005, Grand Californian Aug. 2005, Old Key West Nov. 2005, Boardwalk Villas Aug. 2006, Saratoga Springs Nov. 2006, Boardwalk Villas July 2007, Old Key West Nov. 2007, Beach Club Villas Nov. 2008, Boardwalk Villas Apr. 2009, All Star Music Aug. 2009, Old Key West June 2011, AKV Kidani Village July 2011, AKV Kidani Village


~Our Disney Family~
dischick4778 is offline   Reply With Quote
Old 07-01-2011, 10:22 PM   #1407
dischick4778
DIS Veteran
 
dischick4778's Avatar
 
Join Date: Sep 2004
Location: Queens, NY
Posts: 1,209

Great news, my scan came back clear today! I'm not sure exactly what the number means but last year it was 1.15 and today it was 0. There were no noticeable traces of the cancer. Woo hoo!

The Dr did say I still had antibodies but he was not overly concerned about it and said we would just monitor that with blood tests. Last year that number was over 3000 and today it was 714.

Thanks again for all of the support, I feel relieved and am enjoying time with my family.
__________________
1986, offsite 1988, offsite 1996, Dixie Landings 1998, Coronado Springs 2001, Caribbean Beach Resort May 2002, Port Orleans French Nov. 2002, Old Key West Aug. 2003, Old Key West Nov. 2003, Old Key West Nov. 2004, Animal Kingdom Lodge Aug. 2005, Grand Californian Aug. 2005, Old Key West Nov. 2005, Boardwalk Villas Aug. 2006, Saratoga Springs Nov. 2006, Boardwalk Villas July 2007, Old Key West Nov. 2007, Beach Club Villas Nov. 2008, Boardwalk Villas Apr. 2009, All Star Music Aug. 2009, Old Key West June 2011, AKV Kidani Village July 2011, AKV Kidani Village


~Our Disney Family~
dischick4778 is offline   Reply With Quote
Old 07-02-2011, 06:22 AM   #1408
Christine
Would love to be able to sit on the couch for a few days, get a good book, and do NOTHING!
Considers the DIS as Bladder Training 101
 
Join Date: Aug 1999
Location: Northern Virginia
Posts: 23,479

Congratulations!!! Hope you are enjoying some delicious food.
__________________
Christine

Vacation Home - Indian Creek - July 2012
Vacation Home - Terre Verde Resort - July 2009
Vacation Home - Terre Verde Resort - Easter 2007
Shades of Green - June 2005
Vistana Resort - May 01
Shades of Green - May 99
Shades of Green - Apr 97
CBR & Shades of Green - May 95
Christine is offline   Reply With Quote
Old 07-02-2011, 12:51 PM   #1409
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: 9,784

dischick - I am so happy to hear your good news.. I am sure you have already enjoyed a cheeseburger and fries!!

Next week I am calling to rearrange my endo visit so dh can be with me. One time the endo said if I did good for the lst 3 years then she felt like I would be good. So I will ask her as well as dh if she will lower the synthroid, she always says no. So I will have the sonogram and blood work in the next couple weeks.
luvmarypoppins is offline   Reply With Quote
Old 07-04-2011, 09:50 AM   #1410
dischick4778
DIS Veteran
 
dischick4778's Avatar
 
Join Date: Sep 2004
Location: Queens, NY
Posts: 1,209

Happy Fourth of July to all!

I have been celebrating all weekend enjoying good food. I think I put 3 lbs on in two days. Yum!!

Hope you are all enjoying as well.
__________________
1986, offsite 1988, offsite 1996, Dixie Landings 1998, Coronado Springs 2001, Caribbean Beach Resort May 2002, Port Orleans French Nov. 2002, Old Key West Aug. 2003, Old Key West Nov. 2003, Old Key West Nov. 2004, Animal Kingdom Lodge Aug. 2005, Grand Californian Aug. 2005, Old Key West Nov. 2005, Boardwalk Villas Aug. 2006, Saratoga Springs Nov. 2006, Boardwalk Villas July 2007, Old Key West Nov. 2007, Beach Club Villas Nov. 2008, Boardwalk Villas Apr. 2009, All Star Music Aug. 2009, Old Key West June 2011, AKV Kidani Village July 2011, AKV Kidani Village


~Our Disney Family~
dischick4778 is offline   Reply With Quote
Reply



Thread Tools
Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 11:18 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: