Re: PLEASE HELP ME SORT THIS OUT/Betty

[Guest guest]

Hi Betty,

I've never heard of the mutation thing. What causes

this to happen? I mean...why would they just mutate

for no reason? Or does stunning cause this? If

that's the case it makes an awfully good argument for

suppression. If you are holding all thyroid cells at

bay with high doses of thyroid medication...isn't that

the same as remission? As long as you can keep them

from activating? Also...has anyone had RAI with

lithium?

Lauri

--- bettyy@... wrote:

> Hi Lauri,

>

> I'm just a patient and trying to learn how this all

> works. The way I

> understand it, thyroid cells (cancerous or not) have

> the ability to uptake

> iodine and are the only cells in the body with the

> ability to retain

> iodine. Thus, the ability to use radioactive iodine

> to kill thyroid cells.

> Overuse of RAI doesn't cause the cells to lose this

> ability. However, RAI

> doses taken too close together may cause stunning

> (the cells have uptaken

> their iodine and can't absorb any more) or the

> cancerous kind may mutate

> and become undifferentiated (or is it

> dedifferented?). Anyway, that means

> that the cancerous thyroid cells no longer act like

> thyroid cells. So, it

> seems to me that the goal is to kill those darn

> cancer cells before they

> decide to mutate (unfortunately, there's no way of

> knowing when they're

> going to do this nasty thing until it's done).

> While they're

> differentiated, the tools we have are surgery and

> the radioactive iodine

> treatment. The suppression part is to keep those

> thyroid cells quiet

> between scans and treatments. So, use of RAI

> judiciously seems to be a

> good thing to me.

>

> Hopefully I make sense, if not, someone correct me.

> Thanks.

>

> Betty

> mailto:bettyy@...

>

>

>

> At 3:13 AM -0700 8/16/2002, Lauri Thornburg wrote:

> >You know Ellen...

> >

> >I think I'm the most confused one here. It seems

> no

> >one here that I've read so far has been treated the

> >same way my daughter has been treated over the

> years.

> >At least I haven't SEEN it in this group yet, but I

> >haven't been a member long either.

> >

> >When this all first came about in 1995, I was told

> >that my daughter's tumor should be removed with a

> TT

> >followed by RAI treatment. After that they said

> there

> >would probably be some remaining microscopic cells

> but

> >we would keep them suppressed with high dose of

> >Synthroid thereby keeping her in a sort of

> > " remission " .

> >

> >So for years I have been led to believe that

> surgery

> >with supression is always the first choice with

> >radiation held back as a trump card. I was told

> that

> >you should use radiation as little as possible

> because

> >over time it could become ineffective. So for

> years

> >this suppression thinking had worked fine but her

> >cancer came back in 1998. Again...it was treated

> with

> >surgery and suppression. Worked well again until

> this

> >year. I wonder though, if that method quit

> working

> >because we moved to a different state and she

> hooked

> >up with a doctor who refused to believe that her

> >Synthroid had to be .200 or higher. I wonder if

> the

> >lose dose of her Synthroid for over a year

> encouraged

> >the cells to activate so to speak.

> >

> >So now she's found a really outstanding doctor who

> >wants to go with radiation because her tg is 22 but

> >the scan showed nothing. I think that was because

> a

> >prior CT of her head messed it up.

> Anyway...they'll

> >do another scan at the end of Sept. and if it shows

> a

> >hot spot, I just can't shake the concept I've

> always

> >been taught was the way to go...surgery and

> >suppression. I am afraid to do this RAI treatment

> if

> >the other works as well.

> >

> >Again...I really haven't seen anyone else talk

> about

> >this. It seems all the docs the good people here

> use

> >jump out with RAI treatment first. So now I'M

> >confused as to which method is right or wrong.

> Which

> >method is better or worse. I know the way they've

> >handled it thus far has worked well for her...and

> now

> >since we've started with this doc, my whole

> thinking

> >has to change. I'm fighting the fact that the

> >surgery/suppression method seems more logical to me

> >because so many talk about how RAI is the best way.

> >

> >So believe me, you're not the ONLY one who is

> >confused! I hope things go well for you whatever

> you

> >decide Ellen.

> >

> >Lauri

>

>

>

__________________________________________________

[Guest guest]

Hi Lauri,

I'm no biologist but I stayed at a Holiday Inn Express last night (inside joke

for those of you familiar with the series of commercials from Holiday Inn

Express).

Anyway, as I understand it, cancer is already a a mutation of normal cells. I

think cancer is uncontrolled cell growth. Each time cells replicate, there is a

chance for mutation.

Mutation of papillary cancer has nothing to do with stunning. Thyroid-like cells

like to take up iodine. Stunning is when the cells have a full tummy and can't

eat another bite. However, just like a stomach, eventually, the iodine gets used

up and the cells are ready for another meal.

Remission is a different thing altogether. I've always thought remission was

when the doctors think you're cancer free but they're not sure. So, with my

definition, suppression would be equivalent to remission after a clean scan and

an undetectable Tg while hypo. I haven't really thought about remission because

I hadn't had a clean scan until last week.

Like I said, I'm no biologist and I've had no medical training. Hopefully,

someone in the know will correct me if I'm wrong.

Betty

mailto:bettyy@...

-------

I've never heard of the mutation thing. What causes this to happen? I

mean...why would they just mutate for no reason? Or does stunning cause this?

If that's the case it makes an awfully good argument for

suppression. If you are holding all thyroid cells at bay with high doses of

thyroid medication...isn't that the same as remission? As long as you can keep

them from activating?

-------

[Guest guest]

I'm no biologist either Betty but that makes sense to

me! Again...it seems that when someone is on a very

high dose of thyroid meds it fools the nasty little

remaining thyroid cells into believing they're not

needed so I believe (just my personal belief...no

proof) that that keeps them from multiplying or

mutating. Just sort of keeps them dormant because the

thyroid med is doing the work. Thus...they sort of

stay in remission. That's been my argument all aglong

for the suppression method of handling things as well.

Doe this make sense to you?

Lauri

--- Betty wrote:

> Hi Lauri,

>

> I'm no biologist but I stayed at a Holiday Inn

> Express last night (inside joke for those of you

> familiar with the series of commercials from Holiday

> Inn Express).

>

> Anyway, as I understand it, cancer is already a a

> mutation of normal cells. I think cancer is

> uncontrolled cell growth. Each time cells replicate,

> there is a chance for mutation.

>

> Mutation of papillary cancer has nothing to do with

> stunning. Thyroid-like cells like to take up iodine.

> Stunning is when the cells have a full tummy and

> can't eat another bite. However, just like a

> stomach, eventually, the iodine gets used up and the

> cells are ready for another meal.

>

> Remission is a different thing altogether. I've

> always thought remission was when the doctors think

> you're cancer free but they're not sure. So, with my

> definition, suppression would be equivalent to

> remission after a clean scan and an undetectable Tg

> while hypo. I haven't really thought about remission

> because I hadn't had a clean scan until last week.

>

> Like I said, I'm no biologist and I've had no

> medical training. Hopefully, someone in the know

> will correct me if I'm wrong.

>

> Betty

> mailto:bettyy@...

>

>

> -------

> I've never heard of the mutation thing. What causes

> this to happen? I mean...why would they just mutate

> for no reason? Or does stunning cause this? If

> that's the case it makes an awfully good argument

> for

> suppression. If you are holding all thyroid cells

> at bay with high doses of thyroid medication...isn't

> that the same as remission? As long as you can keep

> them from activating?

> -------

>

__________________________________________________

[Guest guest]

Hi Lauri,

Yes, I agree completely that the theory of suppression is to keep the

thyroid-like cells sort of dormant. However, there's no telling what cancerous

thyroid cells may decide to do. I think that's why there are sometimes stories

of people that have Tg rise even while suppressed.

I guess it's a question of what you think is there. If it's large enough and

accessible, I'd try to get it out with surgery and pick up the remnants with

RAI. If it can't be seen, but I know it's there, I'd go after it with RAI. If

I think I'm clean, I'd go for suppression but be vigilant in case I'm not clean.

Of course, that's what I would do if I was making the choice. But I have no

medical training so I'm willing to listen to my doctors. If their proposals

don't sound reasonable, I'll question them and see what they say. I guess I'd

need to find new doctors if I don't agree.

Betty

mailto:bettyy@...

-------

Again...it seems that when someone is on a very high dose of thyroid meds it

fools the nasty little remaining thyroid cells into believing they're not needed

so I believe (just my personal belief...no proof) that that keeps them from

multiplying or mutating. Just sort of keeps them dormant because the thyroid

med is doing the work. Thus...they sort of stay in remission. That's been my

argument all aglong for the suppression method of handling things as well. Doe

this make sense to you?

Lauri

-------

[Guest guest]

That's EXACTLY how I think about this whole thing.

That's where the problem is. They don't know yet if

there's a mass until the scan next month yet they are

planning a very aggressive RAI treatment with 4 weeks

of lithium. That's why I have so many questions.

Lauri

--- Betty wrote:

> Hi Lauri,

>

> Yes, I agree completely that the theory of

> suppression is to keep the thyroid-like cells sort

> of dormant. However, there's no telling what

> cancerous thyroid cells may decide to do. I think

> that's why there are sometimes stories of people

> that have Tg rise even while suppressed.

>

> I guess it's a question of what you think is there.

> If it's large enough and accessible, I'd try to get

> it out with surgery and pick up the remnants with

> RAI. If it can't be seen, but I know it's there,

> I'd go after it with RAI. If I think I'm clean, I'd

> go for suppression but be vigilant in case I'm not

> clean. Of course, that's what I would do if I was

> making the choice. But I have no medical training

> so I'm willing to listen to my doctors. If their

> proposals don't sound reasonable, I'll question them

> and see what they say. I guess I'd need to find new

> doctors if I don't agree.

>

> Betty

> mailto:bettyy@...

>

>

>

> -------

> Again...it seems that when someone is on a very high

> dose of thyroid meds it fools the nasty little

> remaining thyroid cells into believing they're not

> needed so I believe (just my personal belief...no

> proof) that that keeps them from multiplying or

> mutating. Just sort of keeps them dormant because

> the thyroid med is doing the work. Thus...they sort

> of stay in remission. That's been my argument all

> aglong for the suppression method of handling things

> as well. Doe this make sense to you?

>

> Lauri

> -------

>

__________________________________________________

[Guest guest]

Hi Lauri,

I must be doing really good because no one is correcting me. :-)

What the heck, let me go out on a limb here and go to specifics.

In your initial email, you mentioned that your daughter had TT and RAI and

then the doctor said there were microscopic cells that would be kept under

control with suppression. I don't think that's exactly right. If

subsequent scans and Tg show nothing, then there might be microscopic cells

but one could also assume that there is nothing left. The suppression at

this point is like remission. If the subsequent scans or Tg showed

something, then the doctors know there's something and they should

recommend that you do something, either surgery or RAI depending on what

happened in the scans and Tg.

From your first email, I gather that your daughter had high Tg (22) and

undetectable scan after several years of clean scans and blood tests.

Also, she's going to have another scan at the end of September. And your

concern is that the doctor is going to recommend RAI rather than surgery.

I think that the doctor is either expecting nothing to be seen or something

confined to the thyroid bed. Obviously, if there's nothing to be seen in

the scan, there will be nothing to operate on. If it's something in the

thyroid bed, it would be some sort of leftover thing that is too close to

something else and the doctor isn't going to want to operate. However, you

should check with the doctor on what his thinking is. If the scan shows

positive lymph nodes, I think that they usually operate to remove them

(because these are usually big and because the doctor will want to visually

inspect and touch the ones nearby). If it's elsewhere, then it depends on

where it is and how big it is. But, my guess is that he isn't expecting

that.

Whew! Good thing I'm not a doctor and can't be held responsible for

anything I say. :-)

I really recommend that you talk with the doctor. I also recommend that

you ask why on the lithium. I thought that there's some test that they can

do to determine that a person has good uptake but low retention (that's

when they typically use lithium, to increase the retention time). Anyway,

are they recommending the lithium because they know your daughter has low

retention? If so, how do they know that. Or is it their practice to use

the lithium because they figure it can't hurt and can only help? (I like

to ask somewhat leading questions that can be completely off-base so that

they'll feel a need to correct me.)

Anyway, these are my thoughts and I hope they help.

Betty

mailto:bettyy@...

At 2:57 AM -0700 8/19/2002, Lauri Thornburg wrote:

>That's EXACTLY how I think about this whole thing.

>That's where the problem is. They don't know yet if

>there's a mass until the scan next month yet they are

>planning a very aggressive RAI treatment with 4 weeks

>of lithium. That's why I have so many questions.

>

>Lauri

[Guest guest]

Hi Betty,

I'm really not disputing the need for radiation as

much as the lithium. I think the doc is assuming she

has low retention because the last scan was negative

with a tg level of 22. But I don't think he is

considering the fact that she had a CT WITH DYE just

3-1/2 weeks prior to her I131 scan. So of course that

would alter the results. I feel that the scan would

have showed something if that CT hadn't been done. So

now they are doing another scan and I am confident

whatever is there will show up. He's assuming (I

believe) that she has low retention even when we told

him the situation and he's the one who said that the

CT DEFINATELY would have messed up the scan. I don't

know. The lithium part seems very aggressive

considering her numbers. I realize though, that she's

only had one RAI treatment in 7 years and it's

probably time no matter what the results. But 4 weeks

of lithium?? I don't know about that. Have lots to

ask him on the 5th.

Lauri

--- bettyy@... wrote:

> Hi Lauri,

>

> I must be doing really good because no one is

> correcting me. :-)

>

> What the heck, let me go out on a limb here and go

> to specifics.

>

> In your initial email, you mentioned that your

> daughter had TT and RAI and

> then the doctor said there were microscopic cells

> that would be kept under

> control with suppression. I don't think that's

> exactly right. If

> subsequent scans and Tg show nothing, then there

> might be microscopic cells

> but one could also assume that there is nothing

> left. The suppression at

> this point is like remission. If the subsequent

> scans or Tg showed

> something, then the doctors know there's something

> and they should

> recommend that you do something, either surgery or

> RAI depending on what

> happened in the scans and Tg.

>

> From your first email, I gather that your daughter

> had high Tg (22) and

> undetectable scan after several years of clean scans

> and blood tests.

> Also, she's going to have another scan at the end of

> September. And your

> concern is that the doctor is going to recommend RAI

> rather than surgery.

> I think that the doctor is either expecting nothing

> to be seen or something

> confined to the thyroid bed. Obviously, if there's

> nothing to be seen in

> the scan, there will be nothing to operate on. If

> it's something in the

> thyroid bed, it would be some sort of leftover thing

> that is too close to

> something else and the doctor isn't going to want to

> operate. However, you

> should check with the doctor on what his thinking

> is. If the scan shows

> positive lymph nodes, I think that they usually

> operate to remove them

> (because these are usually big and because the

> doctor will want to visually

> inspect and touch the ones nearby). If it's

> elsewhere, then it depends on

> where it is and how big it is. But, my guess is

> that he isn't expecting

> that.

>

> Whew! Good thing I'm not a doctor and can't be held

> responsible for

> anything I say. :-)

>

> I really recommend that you talk with the doctor. I

> also recommend that

> you ask why on the lithium. I thought that there's

> some test that they can

> do to determine that a person has good uptake but

> low retention (that's

> when they typically use lithium, to increase the

> retention time). Anyway,

> are they recommending the lithium because they know

> your daughter has low

> retention? If so, how do they know that. Or is it

> their practice to use

> the lithium because they figure it can't hurt and

> can only help? (I like

> to ask somewhat leading questions that can be

> completely off-base so that

> they'll feel a need to correct me.)

>

> Anyway, these are my thoughts and I hope they help.

>

> Betty

> mailto:bettyy@...

>

>

>

> At 2:57 AM -0700 8/19/2002, Lauri Thornburg wrote:

> >That's EXACTLY how I think about this whole thing.

> >That's where the problem is. They don't know yet

> if

> >there's a mass until the scan next month yet they

> are

> >planning a very aggressive RAI treatment with 4

> weeks

> >of lithium. That's why I have so many questions.

> >

> >Lauri

>

>

>

__________________________________________________

[Guest guest]

Hey lauri

why 4 weeks? I did the li , thing and was on it for only 8 days! I print DR

Ain note and took it to my endo ,!

Love,

Jolie