risk assessment

[Guest guest]

Jan 7 2001 driving on the freeway i saw lanes blending into eachother ,, i

had double vision in my right eye! on Jan 25 /2001 i had an mri of my brain

which my DR, read normal,! i was in pain couldn't see was dizzy etc. and my

neurologist and internist and opthomalogist keep telling me it was a virus.

on Aug 8th 2001 my new neurologist did mri/mra from my brain a tumor was

found it has grown 3 times since Jan/ he did other scan another tumor in

vertebrae/mid back 9//still they did not know what was wrong, i had a needle

biopsy done on sep13 from the tumor in my back and pathologists discovered

thyca in an advanced stage follicular. i had thyroidactomy in Oct and RAI in

Nov,

i also did have 10 days of radiation to my brain

before my surgery there are plenty of cancer left in me ,, i have been so

sick in such an agony and so very scared to die, there were metastases in my

knee ,, ribcage right side <the RAI worked on it is gone> in my left lower

back,,and a few more,,,

i just find out MRI on jan16 2002 the tumor in my head has grown back and is

bigger, my endo does not like any other treatment but RAI don't want to do

radiation i will be due for another RAI in may ,, does anyone uses external

beam radiation in addition to RAI? another thing he put me on 200 mcg of

levoxyl ,,any suggestions advice? many thanx

Jolie

Ps, which thyroid drug is better?

[Guest guest]

Hi this is Jolie

at what point are we supposed to do scan? why some are on cytomel and some

onlevoxyl?how often is a scan necessary? what does tt mean? you are the

greatest i have been so alone since Sep 2001 when was diagnosed with

follicular /advanced stage thyca,i cherish you all my buddies! another

question have you heard of green tea ///and Isaac tea with tumor melting

affect?

many thanx

Jolie

[Guest guest]

thanx Betty, and Marilyn,

my endo said he cant cure my thyca but hopes to put it in remission! how big

is different how big is the differnce?if RAI doesn't work on some of it what?

the tumor in my brain took it but it has grown back already.

many thanx

Jolie

[Guest guest]

To make a long story short, I had a TT on 12/7/01.

The lab reports showed 3 foci of microscopic papillary

carcinoma totaling less than 3 mm. After a miserable

7 weeks, I received 150 RAI this past Wed. and will be

going for a scan on Wed. Fortunately, I am able to be

at home since we are empty nesters. I've been told

that I am to be isolated until this upcoming Friday.

I started taking 5 mcg cytomel and 150 mcg synthroid

yesterday, so I'm feeling better and am now starting

to think about how I should proceed from here.

Given that my cancer was caught in a very early stage,

I need to do a risk/benefit analysis for myself to

determine the future course of treatment. I was

pretty non-functional for the past three weeks and I

really not too happy at the thought of having to go

hypo any time again. I am being followed by an endo

who I've seen for years and she's been wonderful, but

I'm not sure that I'm being given all the information

I need to make a good decision.

Red flag #1: The radiation oncologist I'm seeing told

me that they treated 70 patients last year with thyca

and that was the most they had ever seen. Seems low

to me.

Red flag #2: I've had thyroid disease for almost as

long as I can remember. I'm a Utah " fallout baby " so

my endo has been on the lookout for thyca. The

radiation oncologist dismissed my history as not very

important.

Red flag #3: I live in southern NJ near Phila and

most of the doctors I see have no idea about the

effects of the above-ground nuclear testing in the

1950's.

My endo told me that under ordinary circumstances, my

thyca may not have been caught for another 20 years

and she caught it only because we discovered a nodule

that hadn't been there at my last checkup. She's also

told me that the incidence of thyca has increased

during the past decade. I haven't yet asked her how

many thyca patients she's treated - that's at our next

visit.

I'm thinking that I should seek another opinion.

There are many fine teaching hospitals in

Philadelphia, along with the Fox Chase Cancer Center.

Does anyone have experience with any of the

institutions in Philly?

I truly could not have endured one more day being

hypo. I was so sick that I couldn't eat or drink - I

even lost weight! By this last Friday, I barely had

the strength to hit the buttons on the tv remote, much

less keep my eyelids open. I couldn't think or speak

coherently and had I not been able to focus on Sat

morning when I could take the cytomel, I don't know

what I would have done.

Any suggestions?

Beverly

__________________________________________________

[Guest guest]

Beverly,

I have been using HUP (U of Penn) for over 13 years for treatment of

thyroid cancer. I moved to Atlanta 3 years ago, but still continue to be

treated in Philly. If you have been using the South Jersey hospitals, it

would be worth it to swith to HUP in my opinion.

Elva Atlanta

TT NOV.88, RAI 29.9 Jan. 00, RAI 120 Aug. 00

[Guest guest]

Beverly,

I have been using HUP (U of Penn) for over 13 years for treatment of

thyroid cancer. I moved to Atlanta 3 years ago, but still continue to be

treated in Philly. If you have been using the South Jersey hospitals, it

would be worth it to switch to HUP in my opinion.

Elva in Atlanta

TT NOV.88, RAI 29.9 Jan. 00, RAI 120 Aug. 00

[Guest guest]

Hi Beverly,

Typically, your endo will want to do another scan in about a year to make

sure that the RAI got all your thyroid cells and everything is clean.

Normally, you do need to go hypo for that. However, I don't think you need

to be hypo for 7 weeks. You only need to get your TSH to above 30. I had

my first scan last year and the doctor scheduled my scan for the fifth

week. At the time, my TSH was around 95.

Another thing that might help is taking cytomel until two weeks before your

scan. I opted not to do that because going hypo doesn't really bother me

since it's a slow steady slide. I get to the miserable stage without

realizing it. I think taking cytomel would accentuate the slide because it

will occur immediately on stopping the cytomel. If you're miserable right

off the bat, then cytomel could be a lifesaver.

One other option, although not recommended until after you have two clean

scans, is thyrogen. You prep for the scan without going off medication.

Before the scan, you get two shots and end up fully hypo in days rather

than weeks. I think its contraindicated for certain cases such as heart

problems.

Anyway, hope some of this is helpful. I'm just a patient learning like

everyone else.

Betty

mailto:bettyy@...

At 10:12 AM -0800 2/3/2002, Beverly Fusfield wrote:

>To make a long story short, I had a TT on 12/7/01.

>The lab reports showed 3 foci of microscopic papillary

>carcinoma totaling less than 3 mm. After a miserable

>7 weeks, I received 150 RAI this past Wed. and will be

>going for a scan on Wed. Fortunately, I am able to be

>at home since we are empty nesters. I've been told

>that I am to be isolated until this upcoming Friday.

>

>I started taking 5 mcg cytomel and 150 mcg synthroid

>yesterday, so I'm feeling better and am now starting

>to think about how I should proceed from here.

>

[Guest guest]

I am not sure what you mean by 'at what point are we supposed to do

scan?' That depends on where one is in treatment. Most people have a

TT (Total Thyroidectomy) and then have either a diagnostic scan or RAI

therapeutic dose followed by a post-ablative scan at about six weeks

after their TT. Scans after that are generally dependent on your Dr's

recommendation....maybe one in one year and then stretched out to

longer periods, depending on your particular case.

Cytomel is T-3. Levoxyl is T-4 (like Synthoid, Unithroid, etc.)

Have not heard of green tea and Isaac tea with regards to tumor

melting. Most of us have such good response to TT, RAI and TSH

suppression therapies, that we pretty much stick to conventional

methods of treatment.

Marilyn

> Hi this is Jolie

> at what point are we supposed to do scan? why some are on cytomel and some

> onlevoxyl?how often is a scan necessary? what does tt mean? you are the

> greatest i have been so alone since Sep 2001 when was diagnosed with

> follicular /advanced stage thyca,i cherish you all my buddies! another

> question have you heard of green tea ///and Isaac tea with tumor melting

> affect?

> many thanx

> Jolie

>

>

>

[Guest guest]

Hi Jolie,

There are a variety of scans that thycas do. The first one is what I call

the pretreatment scan that is typically done after surgery to determine

what dosage of RAI to prescribe. This scan is optional and some nuclear

medicine docs prefer to prescribe based on your history. This scan would

be followed by treatment within three days. The second type of scan is the

post-treatment scan. Done about a week to ten days after treatment, it

takes advantage of the high dose of radioactive iodine you just received.

It shows uptake and is an opportunity to get a better picture of what's

going on with thyroid cells in your body. The last type of scan is the

" annual " scan. The first one will probably be about six months to 14

months after your RAI treatment. Generally, RAI is slow acting and can

still be killing thyroid cells up to a year after treatment. So, you want

to scan after your treatment is done to see if it worked. If all is well,

you will probably return annually for a scan to make sure that all is

clean. The reason for continual monitoring is that a single cancer cell

can grow back. However, a single cell is just too small to see so one

can't be absolutely sure that all is well. Annual scans for a few years

will ease everyone's minds and, if scans continue to be clean, can be every

two years or longer. I think some doctors eventually declare a patient

cured and no longer recommend scans. However, there are some on this list

who have found recurrence after 20 years.

As for cytomel and levoxyl, cytomel is T3 and levoxyl is T4. Generally,

your thyroid produces T4 which has a long half-life and your organs convert

it to T3 which has a short half-life. For long-term maintenance, we need

T4 supplementation because we no longer have a thyroid to produce T4. In

addition, because there is the possibility that thyroid cancer cells

remain, we take excess T4. The reason for that is to keep TSH (thyroid

stimulating hormone) low. TSH is put out by your pituitary gland when T4

is low. It's purpose is to tell your thyroid to produce T4. Without a

thyroid, the TSH is useless. Unfortunately, it tells all thyroid cells to

get to work, including any cancerous thyroid cells that remain. So, excess

T4 will keep TSH low so that any remaining thyroid cells are not encouraged

to grow.

Regarding your final question on green tea, I'm not an alternative medicine

type so can't comment reliably on its supposed powers. However, being

firmly rooted in science, I view all these claims with a jaundiced eye.

However, I see no harm in drinking green tea. It's been drunk for

centuries without any ill effects.

Well, I'm sure that you weren't asking for a treatise on thyca so I better

end here. Hope some of this was useful. Keep asking questions.

Betty

mailto:bettyy@...

At 4:27 PM -0500 2/3/2002, trejolie10@... wrote:

>Hi this is Jolie

>at what point are we supposed to do scan? why some are on cytomel and some

>onlevoxyl?how often is a scan necessary? what does tt mean? you are the

>greatest i have been so alone since Sep 2001 when was diagnosed with

>follicular /advanced stage thyca,i cherish you all my buddies! another

>question have you heard of green tea ///and Isaac tea with tumor melting

>affect?

>many thanx

>Jolie

>

[Guest guest]

Hi Beverly,

I'm not familiar with hospitals in your area, but wanted to say that it is

always wise to follow up a thyca diagnosis. Hypo is no fun, but a

necessary part of having ThyCa. Your next hypo experience may be totally

different. I have had many hypo trips and each was a tad different. I

would suggest that you have at least one or two hypo scans, at intervals

determined by your doctor. Mine have been yearly at the closest. Sometimes

after two clean hypo scans, Thyrogen can be used, making it possible to

stay on your levothyroxine. Myself, I always go hypo. When you speak of

the 1950's and having been a Utah " fallout baby " this alone would make you

a candidate for careful followup, I would think. You are fortunate that

your thyca was caught now instead of 20 years from now.

Best to you as you weigh your options,

in OH

Radiation to thymus as infant

=====

Mail to: grammyDx2@...

1965 TT P/F thyca w/lymph mets,

Hypoparathyroidism

1982 RAI for neck & chest mets

09/10/01 Cean scan PTL~!

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