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Message: 4

Date: Tue, 08 Jul 2003 02:17:22 -0000

Subject: Re: 's update

> she's happy to be eating more

> normally again but she said the inside of her mouth has a weird taste

> and her gums are raw. Also it hurts to chew. She already had TMJ

> but the hypo-ness seems to be adding to it. I just wish she was

> feeling okay. Sigh.

This is normal..not fun, but normal. Ouch..I can remember that.

Everything tasted sort of salty (some folks have a metallic taste),

and I had so many canker sores in my mouth :-(. Yuck!! It should get

better soon!

[ After I told her about salty and metallic, she said the taste in her

mouth is salty. Today she said it's getting a bit better :) Yeah. OUCH

to canker sores. What did you do about that? How long did they last? ]

> Oh okay so you're saying that she might want

> to consider having one more scan, a clean one, in 6-12 mos before

> using Thyrogen? I just want to make sure I understand.

I would definitely consider waiting till you have a clean scan. There are

folks here who have used thyrogen for their first scans, and felt quite

comfortable with it, though, so it's something to get info on, and decide

what you feel comfortable with.

> Ok so that would be to ensure all thyroid tissue is gone, otherwise

> it might warp tests?

To ensure all tissue is gone, yes, but it won't warp the tests. There

are 2 issues:

1 - Thyrogen's own web site indicates that it's not quite as reliable as

going hypo at this point (so it's a matter of how much margin of error you

feel comfortable with)

2 - If her scan in a year isn't clean (which usually only is because the

original stuff didn't get ablated fully, not a recurrance of cancer),

they'll likely do another ablation. For this, you have to go

hypo anyway, since thyrogen is not used widely at this point for ablation.

[ Wonder why her Nuc Med dr. suggested Thyrogen in a year then? Is he

possibly not considering that she might want to have a clean scan

first? Hmmmm ]

This is all pretty far away, though, so things could change by then, as

they complete more studies on Thyrogen.

[ True. I have much research to do on this...]

Cheers,

Alisa

[Thank, C.]

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> OUCH to canker sores. What did you do about that? How long did

they >last?

They didn't last too long (I get them periodically). I use OTC canker

sore medicines - don't remember what I used then, but Orajel is one

I've used recently. Hurts like the dickens when you put it on, but as

it dries it puts a film over the sore like a patch.

> Wonder why her Nuc Med dr. suggested Thyrogen in a year then? Is he

> possibly not considering that she might want to have a clean scan

> first? Hmmmm

I suspect not :-) He probably just does it a certain way. Hopefully

he'll be open to options, so that can do what she feels is best

for her. That's one reason I feel it's so important to be

informed..not all doctors will list every option to their patients.

Cheers,

Alisa

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