RE: Speaking of thyrogen....

[Guest guest]

Marilyn,

So what did he have to say about thyrogen???? I've heard that they will be

using it alot more and eventually very few will be going hypo. I want to know

the nity grity about thyrogen. I'm coming on to my 3rd week back from

hypo-hell, and if we can start trusting thyrogen more, I don't ever want to

go hypo again. Going hypo is certainly not for sissys. You can be my friend

again, because even though I didn't gain any weight while on the LID,

unfortunately I know I have now and I'm too chicken to step on the scales to

see just how much! LOL Next week, I'll start working out again. No pain, no

gain!

Patty

[Guest guest]

Hi ,

I have been to the Thyrogen website, but my endo told me that new studies

suggest that it has better ratings, so I am really interested about studies

showing its accuracy is better than thought. My endo thinks that soon

hypo-hell will be days of the past. That would be great if it proves its

purpose. I am one that wants to see the proof!

Thanks,

Patty lin

6-6-00 TT pa ca 1.3cm.

7-10-00 RAI 110 mCi

5-4-01 Clean scan !!! TG<1

[Guest guest]

Okay,Marilyn, I am hanging here,, what did you ask and what did he

say??????Bekki in TX

.....I cornered him and asked him

> lots of questions about Thyrogen as he had worked at Genzyme

through the

> FDA approval of the drug...

>

[Guest guest]

Bekki wrote:

> Okay,Marilyn, I am hanging here,, what did you ask and what did he

> say??????Bekki in TX

Gosh...we just sort of talked about some of the testing that went in to

the PMA (Pre-Market Approval) for the FDA....more about all that goes

into taking a drug to market than about the actual use of it. I'm not

sure how much he knew much about thyroid cancer, but of course, he did

know all about 'hypo hell'. He indicated that the feedback to Genzyme

from patients using Thyrogen and physicians was incredibly postive. He

said I could feel totally comfortable using it -- of course, he doesn't

know my history -- I think this comment was more about the 'safety' of

the drug.

Beaux12@... wrote:

> So what did he have to say about thyrogen???? I've heard that they

> will be

> using it alot more and eventually very few will be going hypo. I want

> to know

> the nity grity about thyrogen. I'm coming on to my 3rd week back from

> hypo-hell, and if we can start trusting thyrogen more, I don't ever

> want to

> go hypo again.

He didn't have anything to say about recent testing on thyrogen ...I

think its FDA approval and his moving to the new company may have

coincided.

Marilyn

[Guest guest]

Hi Patty,

You can find out everything you ever wanted to know about

Thyrogen by going to their website.

http://www.genzyme.com/thyrogen It is all right there. Clicking

on " prescribing information " was very interesting and

informative.

=====

...

3/25/65 tt Papillary ThyCa w/lymph node mets

HPTH 3 days post radical tt

3/25/82 Recurrence in neck/ & R chest

Tx w/RAI 131 176 mCi

hx kidney stones

__________________________________________________

[Guest guest]

> I have been to the Thyrogen website, but my endo told me that new studies

> suggest that it has better ratings, so I am really interested about studies

> showing its accuracy is better than thought. My endo thinks that soon

> hypo-hell will be days of the past. That would be great if it proves its

> purpose. I am one that wants to see the proof!

I think this is true, but premature.

As far as I know there are only two places in the country currently using

Thyrogen for first scans, and even ablations - Memorial Sloan Kettering in NYC

and MD in Texas. (Anyone know of

any others?)

My guess is that Genzyme would just love to have those better ratings on their

web page, so if they're not there, it's because the jury just isn't in yet.

This has all proceeded amazingly fast, considering that Thyrogen was only

approved by the FDA less than 3 years ago (I think - I've been in a hypo fog for

a long, long time).

I have heard some endos opine that the difference in accuracy has more to do

with the length of time one is hypo than the actually quality of the hyponess.

I'm right there with you guys as far as wanting to avoid one more hypo hell, but

until I've had at least one clean scan (should be two), I'm sticking with the

old-fashioned way.

-

NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00 - hypo both times; current TSH

~.06)

"

[Guest guest]

Hi ,

I use MD and that is what my endo tells me. They are really

pushing thyrogen and wanted me to do it for my first scan. She told me it was

unnecessary for me to go through all the tortures of hypo-hell, and it is

very hard on the body. She was a little upset that I went hypo instead, but

for now I really needed a piece of mind. Next year if all my tests stay

looking good, I will probably use thyrogen. She told me that with all the

tests combined it would show up if anything is there to show. She always does

a US, X-ray, TG, along with the thyrogen scan. I met a couple of others that

were there when I was for a thyrogen scan and they said it was wonderful.

They had no side effects and felt fine.

Patty lin

In a message dated 5/24/01 1:44:45 AM Eastern Daylight Time,

katiekabob@... writes:

<< As far as I know there are only two places in the country currently using

Thyrogen for first scans, and even ablations - Memorial Sloan Kettering in

NYC and MD in Texas. (Anyone know of

any others?)

My guess is that Genzyme would just love to have those better ratings on

their web page, so if they're not there, it's because the jury just isn't in

yet.

This has all proceeded amazingly fast, considering that Thyrogen was only

approved by the FDA less than 3 years ago (I think - I've been in a hypo fog

for a long, long time).

I have heard some endos opine that the difference in accuracy has more to do

with the length of time one is hypo than the actually quality of the hyponess.

I'm right there with you guys as far as wanting to avoid one more hypo hell,

but until I've had at least one clean scan (should be two), I'm sticking with

the old-fashioned way.

-

NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00 - hypo both times; current

TSH ~.06)

"

[Guest guest]

> As far as I know there are only two places in the country

>currently using Thyrogen for first scans, and even ablations -

>Memorial Sloan Kettering in NYC and MD in Texas.

> (Anyone know of any others?)

Yes. Mount Sinai Medical Center in NYC uses Thyrogen for first

scans. And according to another poster on this list, so does

Long Island Jewish Hospital. (Probably they are following Sloan

Kettering's lead.)

> My guess is that Genzyme would just love to have those better

>ratings on their web page, so if they're not there, it's because

>the jury just isn't in yet.

I don't think they're allowed to publish those results on their

website because of copyright law. The rights to the test results

belong to the researchers and to the medical journal that

published it.

(This is based on standard copyright laws in publishing.)

I don't know what to make of this whole Thyrogen vs hypo thing. If

MD and Memorial Sloan Kettering are both advocating

Thyrogen for first-time scans in some patients, doesn't that count

for something? I mean, they _are_ the number one and number

two cancer hospitals in the United States (according to US News

and World Report).

For as much as I may learn about thyca (thanks to all you

wonderful people!), I am still not a doctor and I guess at some

point you have to let the appropriately trained professionals

make the call, and I would consider doctors at those two

hospitals as eminently qualified.

Or am I being naive? :-/

--Carmen in nyc

garden variety pap thyca

1.6cm nodule, 6 positive lymph nodes

10/17/00 TT

11/22/00 RAI 100mCi

162mcg Synthroid and feelin' fine

[Guest guest]

Thisis a hard decision. I wish there was an easy answer to this. has

had 2 clean scans and all his tests are right where they should be yet I am

not quite willing to make the thyrogen jump. I am considering it now, he is

due to scan this summer. I just keep wondering if I will always wonder if we

missed something. Going hypo doesn't appear to be too tough for him, he

isn't quite himself but nothing dramatic changes, that I have seen. He got

to an really high level very quickly last year so I think he would only have

to be hypo for a couple of weeks. Thyrogen wouldn't be all that great to

him either with the shots. I honestly just don't know what choice to make.

(

....mom to 7yo w/papcar

[Guest guest]

> My guess is that Genzyme would just love to have those better ratings on

their web > page, so if they're not there, it's because the jury just isn't

in yet.

I agree. If there is new solid data on Thyrogen, Genzyme has no reason to

delay in presenting it. And it isn't just the website; Genzyme puts out

print brochures on Thyrogen w/ the identical reports as to Thyrogen's lesser

reliability, compared to traditional hypo scanning, in detecting thyca in

the neck & distantly.

Nina

geiger@...

[Guest guest]

> I don't think they're allowed to publish those results on their

> website because of copyright law. The rights to the test results

> belong to the researchers and to the medical journal that

> published it.

> (This is based on standard copyright laws in publishing.)

I don't know the particulars here, but I think most drug companies do their

own studies or fund the ones in question. I can't imagine that Genzyme

couldn't make arrangements to cite recent solid studies that came down in

their favor.

> For as much as I may learn about thyca (thanks to all you

> wonderful people!), I am still not a doctor and I guess at some

> point you have to let the appropriately trained professionals

> make the call, and I would consider doctors at those two

> hospitals as eminently qualified.

> Or am I being naive? :-/

I think there's a lot more going on than meets the eye here. And not all

thyca experts have decided Thyrogen is right for everyone. Personally, I'd

rather not be in the experimental group.

I wonder if a lot of docs aren't just sick of hearing their patients

complain about hypo hell, so that Thyrogen looks heaven-sent to them.

Nina

geiger@...

[Guest guest]

<I think there's a lot more going on than meets the eye here. And not all

thyca experts have decided Thyrogen is right for everyone. Personally, I'd

rather not be in the experimental group.

I wonder if a lot of docs aren't just sick of hearing their patients

complain about hypo hell, so that Thyrogen looks heaven-sent to them.

Nina>

Nina,

Does this mean you aren't behind the use of thyrogen yet? I am just feeling

so torn and I honestly think that a lot of the reason I am torn is because

it isn't me I am dealing with. I don't know how feels, truly. I can

only guess at what he is going through. I honestly don't know which is the

best choice. I know anything you say is simply your opinion but I there are

a few on this list whom I always wait to see their replies and you are one

of them.

....mom to ...7yo w/papcar

[Guest guest]

(age 10) has only gone through hypo hell once, which was prior to

her ablation in March of 2000. Her TSH went up to 500 in the six weeks that

she was off synthroid before the ablation and she was miserable, cold, tired

and fat. She couldn't make it through school without sleeping in the

principal's office or on the recess field. Many of the children teased her.

We did thyrogen shots before the first scan in December 1999 before the

ablation and uptake was found. After the ablation, we have performed two

scans (July 2000 and December 2000) using the thyrogen shots and neither

found any uptake. We are assuming that the ablation worked.

By the way, our hospital is CHOC (Children's Hospital of Orange County).

a Kohl

Re: Speaking of thyrogen....

> As far as I know there are only two places in the country

>currently using Thyrogen for first scans, and even ablations -

>Memorial Sloan Kettering in NYC and MD in Texas.

> (Anyone know of any others?)

Yes. Mount Sinai Medical Center in NYC uses Thyrogen for first

scans. And according to another poster on this list, so does

Long Island Jewish Hospital. (Probably they are following Sloan

Kettering's lead.)

> My guess is that Genzyme would just love to have those better

>ratings on their web page, so if they're not there, it's because

>the jury just isn't in yet.

I don't think they're allowed to publish those results on their

website because of copyright law. The rights to the test results

belong to the researchers and to the medical journal that

published it.

(This is based on standard copyright laws in publishing.)

I don't know what to make of this whole Thyrogen vs hypo thing. If

MD and Memorial Sloan Kettering are both advocating

Thyrogen for first-time scans in some patients, doesn't that count

for something? I mean, they _are_ the number one and number

two cancer hospitals in the United States (according to US News

and World Report).

For as much as I may learn about thyca (thanks to all you

wonderful people!), I am still not a doctor and I guess at some

point you have to let the appropriately trained professionals

make the call, and I would consider doctors at those two

hospitals as eminently qualified.

Or am I being naive? :-/

--Carmen in nyc

garden variety pap thyca

1.6cm nodule, 6 positive lymph nodes

10/17/00 TT

11/22/00 RAI 100mCi

162mcg Synthroid and feelin' fine

For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

[Guest guest]

Carmen,

Also, thyrogen scans have been used in europe for a quite awhile. It would

be interesting to look at some statistics from France, Germany, Spain and

Italy to name a few.

Re: Speaking of thyrogen....

>

> > As far as I know there are only two places in the country

> >currently using Thyrogen for first scans, and even ablations -

> >Memorial Sloan Kettering in NYC and MD in Texas.

> > (Anyone know of any others?)

>

> Yes. Mount Sinai Medical Center in NYC uses Thyrogen for first

> scans. And according to another poster on this list, so does

> Long Island Jewish Hospital. (Probably they are following Sloan

> Kettering's lead.)

>

>

> > My guess is that Genzyme would just love to have those better

> >ratings on their web page, so if they're not there, it's because

> >the jury just isn't in yet.

>

> I don't think they're allowed to publish those results on their

> website because of copyright law. The rights to the test results

> belong to the researchers and to the medical journal that

> published it.

> (This is based on standard copyright laws in publishing.)

>

> I don't know what to make of this whole Thyrogen vs hypo thing. If

> MD and Memorial Sloan Kettering are both advocating

> Thyrogen for first-time scans in some patients, doesn't that count

> for something? I mean, they _are_ the number one and number

> two cancer hospitals in the United States (according to US News

> and World Report).

>

> For as much as I may learn about thyca (thanks to all you

> wonderful people!), I am still not a doctor and I guess at some

> point you have to let the appropriately trained professionals

> make the call, and I would consider doctors at those two

> hospitals as eminently qualified.

>

> Or am I being naive? :-/

>

> --Carmen in nyc

> garden variety pap thyca

> 1.6cm nodule, 6 positive lymph nodes

> 10/17/00 TT

> 11/22/00 RAI 100mCi

> 162mcg Synthroid and feelin' fine

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Geiger wrote:

> How often does he scan? You might alternate--hypo scan & Thyrogen

> scan.

This seems a reasonable solution for lots of us as far as I am

concerned. For those of us who are 'frequent scanners' it would mean

that hypo hells are less frequent and therefore not so hard to endure.

On the other hand, if Thyrogen misses something, it would likely show up

on the following hypo scan....so most of the bases are covered. (Of

course, once you get a taste of doing it the Thyrogen way, it might take

a lot to make you wanna go hypo the next time)!

Marilyn

[Guest guest]

> I can't imagine that Genzyme couldn't make arrangements

> to cite recent solid studies that came down in their favor.

When you're dealing with copyright law and with the FDA, size (of

company) doesn't matter.

I don't know which force is at work here for not allowing Genzyme

to post a better study on their website, but clearly there must be a

law in operation. The article I posted yesterday is a forceful study

in favor of Thyrogen---and it was conducted by many endos who

have been given awards by ThyCa itself. Genzyme would DIE to

have that study listed on their site. So I believe there must a law

preventing its use.

> I think there's a lot more going on than meets the eye here.

> And not all thyca experts have decided Thyrogen is right for

> everyone. Personally, I'd rather not be in the experimental

>group.

Thyrogen is NOT for everyone. You must have well-differentiated

cancer to qualify.

> I wonder if a lot of docs aren't just sick of hearing their patients

> complain about hypo hell, so that Thyrogen looks heaven-sent

> to them.

Wow. That's a pretty severe accusation. Do you really think

famous thyca doctors like Hay, Mazzaferri, Braverman, DeGroot,

et al, would sign off on a study endorsing the use of Thyrogen

instead of hypo because they are " sick " of listening to their

thyca-afflicted patients?? Because it's " easier " on the doctor?

I am not trying to be snide here. I guess after hearing that:

1) the most major cancer centers in the US are endorsing

Thyrogen's use

and

2) the most celebrated thyca doctors in the country also signed

off on a study endorsing its use

I am left wondering where does all the anti-Thyrogen bias on this

list come from? None of us are doctors here. What superior

information does this list possess that those doctors don't???

Again, I am not being snide. (honest!) I am asking humbly. :-\

Is the entire reason for this list's bias based on the FDA clinical

trials of a few years ago listed on the Genzyme site? Don't the

two factors I list above count?? Or is the fear on this list based

on nothing else but fear??

Just really wondering (and honestly hoping I am not offending

anyone!),

--Carmen in nyc

[Guest guest]

> I can't imagine that Genzyme couldn't make arrangements

> to cite recent solid studies that came down in their favor.

When you're dealing with copyright law and with the FDA, size (of

company) doesn't matter.

I don't know which force is at work here for not allowing Genzyme

to post a better study on their website, but clearly there must be a

law in operation. The article I posted yesterday is a forceful study

in favor of Thyrogen---and it was conducted by many endos who

have been given awards by ThyCa itself. Genzyme would DIE to

have that study listed on their site. So I believe there must a law

preventing its use.

> I think there's a lot more going on than meets the eye here.

> And not all thyca experts have decided Thyrogen is right for

> everyone. Personally, I'd rather not be in the experimental

>group.

Thyrogen is NOT for everyone. You must have well-differentiated

cancer to qualify.

> I wonder if a lot of docs aren't just sick of hearing their patients

> complain about hypo hell, so that Thyrogen looks heaven-sent

> to them.

Wow. That's a pretty severe accusation. Do you really think

famous thyca doctors like Hay, Mazzaferri, Braverman, DeGroot,

et al, would sign off on a study endorsing the use of Thyrogen

instead of hypo because they are " sick " of listening to their

thyca-afflicted patients?? Because it's " easier " on the doctor?

I am not trying to be snide here. I guess after hearing that:

1) the most major cancer centers in the US are endorsing

Thyrogen's use

and

2) the most celebrated thyca doctors in the country also signed

off on a study endorsing its use

I am left wondering where does all the anti-Thyrogen bias on this

list come from? None of us are doctors here. What superior

information does this list possess that those doctors don't???

Again, I am not being snide. (honest!) I am asking humbly. :-\

Is the entire reason for this list's bias based on the FDA clinical

trials of a few years ago listed on the Genzyme site? Don't the

two factors I list above count?? Or is the fear on this list based

on nothing else but fear??

Just really wondering (and honestly hoping I am not offending

anyone!),

--Carmen in nyc

[Guest guest]

> I can't imagine that Genzyme couldn't make arrangements

> to cite recent solid studies that came down in their favor.

When you're dealing with copyright law and with the FDA, size (of

company) doesn't matter.

I don't know which force is at work here for not allowing Genzyme

to post a better study on their website, but clearly there must be a

law in operation. The article I posted yesterday is a forceful study

in favor of Thyrogen---and it was conducted by many endos who

have been given awards by ThyCa itself. Genzyme would DIE to

have that study listed on their site. So I believe there must a law

preventing its use.

> I think there's a lot more going on than meets the eye here.

> And not all thyca experts have decided Thyrogen is right for

> everyone. Personally, I'd rather not be in the experimental

>group.

Thyrogen is NOT for everyone. You must have well-differentiated

cancer to qualify.

> I wonder if a lot of docs aren't just sick of hearing their patients

> complain about hypo hell, so that Thyrogen looks heaven-sent

> to them.

Wow. That's a pretty severe accusation. Do you really think

famous thyca doctors like Hay, Mazzaferri, Braverman, DeGroot,

et al, would sign off on a study endorsing the use of Thyrogen

instead of hypo because they are " sick " of listening to their

thyca-afflicted patients?? Because it's " easier " on the doctor?

I am not trying to be snide here. I guess after hearing that:

1) the most major cancer centers in the US are endorsing

Thyrogen's use

and

2) the most celebrated thyca doctors in the country also signed

off on a study endorsing its use

I am left wondering where does all the anti-Thyrogen bias on this

list come from? None of us are doctors here. What superior

information does this list possess that those doctors don't???

Again, I am not being snide. (honest!) I am asking humbly. :-\

Is the entire reason for this list's bias based on the FDA clinical

trials of a few years ago listed on the Genzyme site? Don't the

two factors I list above count?? Or is the fear on this list based

on nothing else but fear??

Just really wondering (and honestly hoping I am not offending

anyone!),

--Carmen in nyc

[Guest guest]

Carmen--

> Genzyme would DIE to

> have that study listed on their site. So I believe there must a law

> preventing its use.

Well, maybe--but neither of us can really know about that. Remember, it is

just one study. Why is it definitive & the final answer re: all Thyrogen

issues, as you seem to feel?

me before--

> > I wonder if a lot of docs aren't just sick of hearing their patients

> > complain about hypo hell, so that Thyrogen looks heaven-sent

> > to them.

Carmen--

> Wow. That's a pretty severe accusation. Do you really think

> famous thyca doctors like Hay, Mazzaferri, Braverman, DeGroot,

> et al, would sign off on a study endorsing the use of Thyrogen

> instead of hypo because they are " sick " of listening to their

> thyca-afflicted patients?? Because it's " easier " on the doctor?

It wasn't an accusation at all. And it certainly wasn't directed at the

docs in this study, or at any docs in particular. It WAS reflective of

numerous comments made here over the years about how many docs really don't

understand hypo hell & are impatient w/ our reported problems over it.

> I am not trying to be snide here. I guess after hearing that:

> 1) the most major cancer centers in the US are endorsing

> Thyrogen's use

> and

> 2) the most celebrated thyca doctors in the country also signed

> off on a study endorsing its use

> I am left wondering where does all the anti-Thyrogen bias on this

> list come from?

I really don't see this supposed " list bias. " I speak for myself--not the

list. And that goes for the rest of the list members. Including you. Now,

to me, your comments indicate that you have a pro-Thyrogen bias. OK. But

please don't force your views on others. Everyone has to make her/his own

decisions on issues like Thyrogen, & this list should offer both sides of

the question.

Yes, the study you mention is very interesting. But, it is just one study.

Personally, until I read about more studies w/ similar findings & see

convincing explanation for the new favorable conclusions--in contrast to the

less-than-impressive FDA trial statistics--I won't be completely convinced.

As I have said, I hope Thyrogen DOES prove to be a reliable alternative to

hypo scannning.

Nina

geiger@...

[Guest guest]

--- " Geiger " <geiger@m...> wrote:

>Remember, it is just one study. Why is it definitive & the

> final answer re: all Thyrogen issues, as you seem to feel?

I guess I was just blown away by that list of doctors who did the

study. They spanned several major hospitals and looked like the

who's who of thyca. That seemed kind of definitlve to me. But

maybe I am wrong to be impressed by that? :-\

> > I am not trying to be snide here. I guess after hearing that:

> > 1) the most major cancer centers in the US are endorsing

> > Thyrogen's use

> > and

> > 2) the most celebrated thyca doctors in the country also

> > signed off on a study endorsing its use I am left wondering

> > where does all the anti-Thyrogen bias on this list come

> > from?

>

> I really don't see this supposed " list bias. " I speak for

> myself--not the list. And that goes for the rest of the list

> members. Including you. Now, to me, your comments

> indicate that you have a pro-Thyrogen bias. OK. But

> please don't force your views on others. Everyone has to

> make her/his own decisions on issues like Thyrogen, & this

> list should offer both sides of the question.

I guess the list feels biased to me because the only responses

I'm getting to this issue are from people who are against it and

it's not exactly clear to me why.

As far as saying I have a pro-Thyrogen bias---and worse yet, that

I am trying to force my views on others (!!!!)---is pretty ridiculous

to me. (This is one of those times I really wish we had CU-CMe

technology.) I think I tried to make it clear in my previous posts

that I was not being snide, that I was not trying to offend anyone

and that I was just asking---- " humbly, " I even wrote.

Also, you can't say that I'm forcing my views on others, because I

don't have a view on Thyrogen. :-\ I don't know how I feel about

it. I am just *extremely* interested in debating the merits of it

with

an informed audience. For as much as I can explain the pros

and cons to my friends and family, they don't understand the

subtleties of the debate the way you guys do. I feel I was asking

legitimate questions, maybe I also was playing devil's advocate.

I am sorry if anything I wrote seemed like it had less innocent

intentions. :-(

> Yes, the study you mention is very interesting. But, it is just

> one study. Personally, until I read about more studies w/

> similar findings & see convincing explanation for the new

> favorable conclusions--in contrast to the less-than-impressive

> FDA trial statistics--I won't be completely convinced. As I have

> said, I hope Thyrogen DOES prove to be a reliable alternative

> to hypo scannning.

Thank you for your answer.

--Carmen in nyc

[Guest guest]

To All:

I have only cursorily been following the debate over thyrogen, but as usual,

I have some thoughts on the subject.

My own position is that I would want to read the publication, as well as

others on this topic, before making a judgment as to the validity of its

conclusions. For me, reading the summary is not sufficient. ( I have read

the paper on which the Genzyme info is based.) On the other hand, the list

of authors, as Carmen noted, contains some big names in thyca research.

Carmen also mentioned some of the reasons the authors gave as possible

explanations for the difference in results between their study and the

" Genzyme " study. Also, it seems to me that no one who has commented on this

subject, me included, actually knows why Genzyme does not refer to this

study. Not having this information, it is best not to draw any conclusions

as to the reason for this.

I personally appreciate both Carmen and bringing these articles to my

attention. I encourage others to do likewise. I hope to read the articles

in the next few weeks. Also, it would be interesting to read an evaluation

of these studies by Drs. Ain, and Rolla.

BTW, I go to the Mayo Clinic in MN annually for my thyca checkup. The last

two times I used Thyrogen. I did this even though I do not feel completely

confident that this was the best choice.

Let's keep thinking and informing each other about thyca issues.

Marilyn Loeb, Rochester, NY

Re: Speaking of thyrogen....

--- " Geiger " <geiger@m...> wrote:

>Remember, it is just one study. Why is it definitive & the

> final answer re: all Thyrogen issues, as you seem to feel?

I guess I was just blown away by that list of doctors who did the

study. They spanned several major hospitals and looked like the

who's who of thyca. That seemed kind of definitlve to me. But

maybe I am wrong to be impressed by that? :-\

> > I am not trying to be snide here. I guess after hearing that:

> > 1) the most major cancer centers in the US are endorsing

> > Thyrogen's use

> > and

> > 2) the most celebrated thyca doctors in the country also

> > signed off on a study endorsing its use I am left wondering

> > where does all the anti-Thyrogen bias on this list come

> > from?

>

> I really don't see this supposed " list bias. " I speak for

> myself--not the list. And that goes for the rest of the list

> members. Including you. Now, to me, your comments

> indicate that you have a pro-Thyrogen bias. OK. But

> please don't force your views on others. Everyone has to

> make her/his own decisions on issues like Thyrogen, & this

> list should offer both sides of the question.

I guess the list feels biased to me because the only responses

I'm getting to this issue are from people who are against it and

it's not exactly clear to me why.

As far as saying I have a pro-Thyrogen bias---and worse yet, that

I am trying to force my views on others (!!!!)---is pretty ridiculous

to me. (This is one of those times I really wish we had CU-CMe

technology.) I think I tried to make it clear in my previous posts

that I was not being snide, that I was not trying to offend anyone

and that I was just asking---- " humbly, " I even wrote.

Also, you can't say that I'm forcing my views on others, because I

don't have a view on Thyrogen. :-\ I don't know how I feel about

it. I am just *extremely* interested in debating the merits of it

with

an informed audience. For as much as I can explain the pros

and cons to my friends and family, they don't understand the

subtleties of the debate the way you guys do. I feel I was asking

legitimate questions, maybe I also was playing devil's advocate.

I am sorry if anything I wrote seemed like it had less innocent

intentions. :-(

> Yes, the study you mention is very interesting. But, it is just

> one study. Personally, until I read about more studies w/

> similar findings & see convincing explanation for the new

> favorable conclusions--in contrast to the less-than-impressive

> FDA trial statistics--I won't be completely convinced. As I have

> said, I hope Thyrogen DOES prove to be a reliable alternative

> to hypo scannning.

Thank you for your answer.

--Carmen in nyc

For more information regarding thyroid cancer visit www.thyca.org. If you

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[Guest guest]

Carmen--

> I guess I was just blown away by that list of doctors who did the

> study. They spanned several major hospitals and looked like the

> who's who of thyca. That seemed kind of definitlve to me. But

> maybe I am wrong to be impressed by that? :-\

I don't care who is attached to it--one study is one study. And there are

many respected thyca experts who weren't involved w/ this study.

> I guess the list feels biased to me because the only responses

> I'm getting to this issue are from people who are against it and

> it's not exactly clear to me why.

I don't think that's true; people here have posted that they used Thyrogen &

are satisfied w/ it. Plus, I think you are miscontruing a lot of recent

posts. Just because people don't agree w/ you 100% about this recent study

or whatever doesn't mean they are against Thyrogen. If, for instance, you

think I am against Thyrogen, you are incorrect. What I am against

is--people using Thyrogen w/o understanding the issues & w/o having all the

facts, which as it now stands includes the statistics at Genzyme's website.

Plus, of course, this new study. And more to come, in time.

> As far as saying I have a pro-Thyrogen bias---and worse yet, that

> I am trying to force my views on others (!!!!)---is pretty ridiculous

> to me.

Well, the tone of your recent posts on this issue has been troubling, to me.

Nina

geiger@...

[Guest guest]

> Well, the tone of your recent posts on this issue has been

>troubling, to me.

Please don't even try that with me, Nina. After the repeated

flamings that you and others received on this list about three

months ago because of the " tone " of your postings, I think you

and I both know that tone is the last thing that anyone can

interpret from an email.

Just to clear my reputation here, I want to reiterate the things I

wrote in this thread:

>I am not trying to be snide here

>Again, I am not being snide. (honest!) I am asking humbly. :-\

>Just really wondering (and honestly hoping I am not offending

>anyone!)

I really welcome all your opinions on Thyrogen, and everything

else thyca-related. You have far more experience with this than I

do. But I do not accept any personal attacks; I had no tone

whatsoever other than one of honest inquiry from a person who

has a pressing decision to make. I think I made that very clear.

--Carmen

[Guest guest]

Carmen--

>>>After the repeated

flamings that you and others received on this list about three

months ago because of the " tone " of your postings>>>

I guess we remember that incident differently.

> Just to clear my reputation here, I want to reiterate the things I

> wrote in this thread:

Here are a few of your previous comments that I found troubling, despite

certain disclaimers you tossed in along w/ them--

> That's a pretty severe accusation.

> I am left wondering where does all the anti-Thyrogen bias on this list

come from?

> What superior information does this list possess that those doctors

don't???

> Or is the fear on this list based on nothing else but fear??

So, it looks to me like YOU are the one making attacks. And I find that

troubling, because that isn't what we do here.

You have a view on Thyrogen, so do I, & so do most people here. As the docs

have stated, this is a politically hot topic. Let's try to keep cool. For

now, I suggest moving on.

Nina

geiger@...

[Guest guest]

> Here are a few of your previous comments that I found

> troubling, despite certain disclaimers you tossed in along

> w/ them--

>

> > That's a pretty severe accusation.

> > I am left wondering where does all the anti-Thyrogen bias

> > on this list come from?

> > What superior information does this list possess that

> > those doctors don't???

> > Or is the fear on this list based on nothing else but fear??

> So, it looks to me like YOU are the one making attacks. And

> I find that troubling, because that isn't what we do here.

You are obviously injecting some kind of angry or arrogant tone

of voice into these lines. I wrote them in the spirit of *true

confusion*---that's what all those question marks indicate. I also

wrote those questions pretty much all in a row: They are the

benign stream-of-consciousness ramblings of all the many

questions I am rolling around in my mind.

As I tried to explain, my doctors are practically doing cartwheels

about Thyrogen scans. And they are pretty notable thyca endos.

And then I read the cautious attitude many on this list have

shared, and I wondered: What information am I missing? What

do they know that my endos are not telling me? What should I

make of these pro-Thyrogen studies? That's the perspective all

my postings have come from.

> You have a view on Thyrogen....

No, I don't. As I explained previously and above, I am looking for

one. :-)

> As the docs have stated, this is a politically hot topic.

Does anyone have a posting from the docs on this? I think that

will bring a very informative perspective to this debate.

>Let's try to keep cool. For now, I suggest moving on.

I suggest we move on from this on a personal level, but that we

most definitely keep up the discussion on Thyrogen.

--Carmen