Re: For Judi re Thyrogen

[Guest guest]

Judi wrote***********

> Hi Diane,, you say Wally cannot go hypo anymore,,is it because its

just too

> much for him or do his tumors become agressive? His Tg went up to

29,000

> while taking thyrogen shots? And if so,, he had no ill effects from

it being

> so high? And how long did it take for his Tg to go back down and

whats the

> lowest its been? Sorry for all the questions but if I ever need

RAI again I

> think Thyrogen may be an option but would like to hear from

somebody who has

> gone through it.

> Thanks,,.

> Judi (dx 93 follicular w/bone mets)

>

>

Hi Judi,

Sorry for the delay in getting back to you.Wally was last hypo in

2000 and his kidneys began to fail and he was a medical mess.His

doctor decided that it would be too hard on him to go through this

again, hence Thyrogen.He was also unsuppressed for too long and his

cancer cells just loved that although they spread whilst suppressed

with Wally.His therapeutic doses of RAI are given using Thyrogen.

When I wrote that he had no ill effects from Thyrogen,I meant no side

effects eg nausea etc. The TSH shoots up >100 in 24 hrs and Wally's

doctor wants it up there,150-160,as opposed to those who are happy

with 30.

The Tg staying high is not good,but it goes down quicker with

Thyrogen,down to the low level within days.Wally's Tg has never been

undetectable, I think the lowest no is 9.Unfortunately for him, he is

not the typical papca patient,he has a particularly aggressive

type,it just keeps on growing. He has been getting RAI 3-4 times a

year, depending on his WBC,usually being given 200-250mCi and finds

the most difficult part of it all is being isolated.This time he was

put on a new, stringent LID which did not go over too well,but he

stuck it out.As you could see from his numbers, RAI isn't doing much

to curtail things in spite of excellent uptake so his doctor is

looking into giving Wally chemo.He never wanted to do this before

since Wally has such a good quality of life but I think it has

reached the stage of " damned if you do and damned if you don't " .We

have always been told that there is only about a 20% chance of chemo

improving things.

He is on his way for RAI as I write and as always I am hoping that

THIS time there will be a better scan next Mon.I don't mind any

questions Judi and I sincerely hope that your mets stay controlled.

Take care,

Diane,Ontario,Canada.

wife of Wally age 63,pt & tt1998,papca,hpth,lung & bone mets,EBRx2 for

bone mets,multi RAI,now with Thyrogen for therapeutic doses.