recurrence - I *knew* it but still frustrating

[utahmomma]

Okay, I'm pounding my head against the wall.  I've suspected for quite a while that I was having another recurrence but the labs are in.

Here's my results August 20th:
TSH     .64
Tg        .2
TgAB:  0

Here's my results from yesterday:
TSH   4.93
Tg       .2
TgAB:  2

Aside from the (gasp) rapid climb in TSH even though I'm on stable meds and the still existent thyroglobulin (despite one round of RAI), here's another thing that concerns me (from ThyCa:)

*******************************
Serial TgAb Measurements: It is important for the laboratory to measure TgAb in every specimen sent for Tg measurement. This is both because a patient'ss TgAb status may change from positive to negative or vice versa, and also because the trend in TgAb values over time (i.e. 6 to 12 months) gives additional information on how well the tumor is responding to treatment. A trend down in TgAb levels overtime (years) is a good sign that treatment is effective. In contrast, an increase over time may be an early sign of a recurrence. When a patient has TgAb detected, it is not unusual to see a temporary rise in the TgAb level during the first six months following radioiodine therapy. This may even be a sign of the effectiveness of the treatment. Usually, TgAb values return to the original value or below after six months.
**********************************

I see Dr. McBaldy (my endo) on Wednesday to discuss when I go all nuclear again.  Sigh.   Yeah, it's depressing me and add to that the liver/bile duct pain (from the last RAI scan and scarring it caused) and I'm frustrated.  I'm betting the recurrence is in my liver (or maybe still in my head too) - guess we'll see.

Just wanted to vent.    Argh!!!!!

Utah

[utahmomma]

Cheryl:  I only did all this to punish you for not posting a weekly roundup.

Kipland:  I'm going to bring the radiation hood home with me this time (I think I've pretty much paid for it) - it looks like a thick "sneeze guard" from the all-you-can-eat buffet line.

Hugs to all of you going through this stuff now too.

[ChitChatNine]

the week I don't post a weekly roundup you decide to have appts?  Not fair.

[helsurf]

Hi UTAH!  Urghhhh! I am so sorry you are having to go through all this and i am hoping and praying you don't need another treatment dose! i'm still facing this at the moment too so i'm right there with ya!

big hugs and love!

  Helen x x x

[kipland]

Utah ~ you got a "radiation hood" to stick your head into?  I didn't get that!  :-)  Sounds like that would go well with the halloween costume.  Think you could take it home with you for a few days?  And yes, the whole experience with drinking the glowing goodness was something else.  I was really thirsty afterwards, were you?  

It's funny how they all do things just a bit differently.  I got only the scan dose as well, but have had to be on this *fun* LID for two weeks now. Tomorrow, I get to break free and have some cheese!

Amelia ~ I had to go through hypohell last year for my first scan and treatment as well.  That happened in September, so I wonder if I had waited a few months if I could have done the shots?  All I know is that I don't care to repeat it again.  My tsh was at 145 by the time my scans started, and I felt like the walking dead.  If I read correctly, your RAI is next week?  

Good luck to both of you and keep us posted.

Lori

[utahmomma]

What my endo explained to me is that, YES, it is approved for all scan and treatment doses.  Kick your endo.

[amela321]

I'm sorry, I meant approved not only for diagnostic scans, but for the first RAI treatment a patient has as well.  The Genzyme blurb doesn't seem to indicate that it is approved for subsequent RAI treatments.  If it is, I'm sure mad at my endo, because he was under the assumption that it's not, thus the recent hypo hell :|

Anyway, here's hoping it all turns out well for you.  You are such a major contributor to this forum and your insights are always appreciated :)

[ChitChatNine]

Hey there Utah ......................you are awake and so am I ................ *yawns*

C~

[utahmomma]

The reason I had to go hypo for my TREATMENT dose in 2006 was because the FDA had not approved Thyrogen for treatment - only scan dosages.  My very conservative hospital would not use Thyrogen for treatment because of it had not been approved for that use by the FDA at that time (although other hospitals *would* use it for treatment).

That changed last year.  Here's a quote from Genzyme's website's press announcement from Dec 2007:

"Genzyme Corp. (Nasdaq: GENZ) announced that the U.S. Food and Drug Administration (FDA) has approved a supplemental indication for Thyrogen(R) (thyrotropin alfa for injection) to be used in combination with radioiodine to ablate, or destroy, the remaining thyroid tissue in patients who have had their cancerous thyroids removed. Remnant ablation is a procedure that patients commonly undergo when being treated for thyroid cancer.

"This new indication extends the significant benefits of Thyrogen to patients during their initial treatment for thyroid cancer, in addition to its current use in follow-up diagnostic procedures to detect recurrence," said Mike Heslop, senior vice president and general manager of Genzyme's endocrine business. "This is an important milestone in our ongoing effort to expand the clinical applications of Thyrogen to improve patient care."


Yeah, hypohell was NO fun and I don't want to go through it ever again but, if there is enough recurrence to warrant another large treatment dose, it will be a long discussion with the endo.  :-/

[amela321]

I could be wrong, but isn't Thyrogen only approved by the FDA for the first RAI treatment a patient has?    Having recently gone through hypo hell myself, I wouldn't wish it on anyone, but I thought I remembered reading that somewhere.  

[utahmomma]

Hey Lori - no LID this year (so far) - this will just be the scan dose.  If a recurrence is found then I'll sit down with McBaldy and discuss whether or not I want to go through hypohell and the LID for the treatment dose or do another course of Thyrogen.

Yeah, don't you love drinking the stale, distilled-water tasting radiation?  yum, yum.   They just have me stick my head into the radiation hood (where *they* use tongs and gloves to unscrew the large metal cask and open the little vial of nuclear love), put in the straw, slurp, add more water (3-4 times) and slurp again.  Then I sign a form, set of the geiger counters, and run for the door.  :-0

Fingers crossed on your scans.  Let us know!!

HUGS

Utah

[kipland]

Oh Utah.....it's too bad we couldn't have coordinated!!  I'm glowing NOW!  Funny thing is, I thought I was going to be getting a pill like last year.  Nope ~ they switched to liquid.  And again, I felt like a lepper sitting in the chair covered with those blue plastic hospital things, one taped to the floor, she had me put one on like a bib, then covered my lap with one.  Sheesh!  

I have scans tomorrow and Friday and hopefully (fingers crossed) nothing will be found, and I'll be done.  

Good luck to you in a couple of weeks - I'll definitely be thinking about you.  Do you have to start the LID now too?  Ugh.  Tired of it.

Hugs!
Lori

[amela321]

Sorry to hear your news.  I'm still going through my recurrence, so I can certainly sympathize.  Best wishes to you!

[utahmomma]

Hey all!

Thanks for the well wishes.

My endo increased my Armour dosage and I'm scheduled for the RAI scan (with Thyrogen shots - *thank you*) the last week of October.  Shots on Monday and Tuesday, nuked on Wednesday, and scan on Friday.  If it's like every other scan I've had I'll be having my second scan on Saturday.  :-)

Guess I won't need a Halloween costume - I'll just glow when I answer the door, thus destroying the thyroids of every small child in the neighborhood. :-)

It's a long fight but I'm glad that all of us are pulling each other through it TOGETHER.

Thanks!

Utah

P.S. - My endo asked me how difficult the surgery really is.  I told him it was really quite easy then asked him why.  He said he has an "ugly" nodule, about the size of an egg, on his thyroid and he's debating about surgery - he said he's pretty sure it's cancerous but he hasn't even had an uptake scan or biopsy 'cause he's a chicken.  I smacked him upside the head and told him to follow the advice he'd give his patients and get it OUT!   He said I was joining in on the choir.  :-)  I told him he may be a wonderful endo but $ucked as a patient.  He agreed.

What is it with everyone getting thyroid cancer????

[shannon828]

Just read your post.  Damn stupid F-ing Thyroid.  I'm so sorry.  I pray that this is the last treatment you'll need to get rid of this ****.  Boo.  Sorry :(

[Coco209]

Utah:

I hope you get quick answers and a quick cure.  Sending my good thoughts and wishes your way.  Thank you for your help when you were feeling down. {{{  }}}Carol

[MJ13]

Hey, Girl!!  Geez.....I stay away for a few months and what do you do.....you go and get a reoccurrance  :-P

I would have sent my well wishes and prayers sooner, but it's taken me three weeks just to read the comments from all you fans.

All kidding aside....what a bummer.  My sister (ras48) tipped me off that something was up with you and  that I should check out Medhelp.  I was hoping you had won the lottery and had donated all your millions to thyca research.  Know you're in my thoughts and prayers.  Sending you tons and tons of ehugs!!!!

MJ

[dai3symae]

I just read this and want to add my good wishes, prayers and (((hugs))).....I hope you get good news today.

Sandy

[Me967]

I hope your visit today brings you some kind of good news.  You have been threw so very much.  I hope and pray you get a great doctor and he/she can help you threw this just fine.  In the mean while prayers and BIG HUGS are coming your way.  
Take care;  Amy

[ChitChatNine]

How are you holding up?

[Thypatient]

So sorry you have to deal with another thing.

I hope your visit to Dr. McBaldy produces some positive news.

I will be thinking of you, friend.

[ras48]

Your carring and knowledge meen so much to us all. You have given so tirelessly when you hve gone through rough times yourself. We will be keeping you in our prayers and sending good vibes. Just hang in there.           Regina

[KD9ER]

I'm so sorry to hear this news.  You and your family have been through so much.  I will be saying lots and lots of prayers for you all.  I really hope you get a good internist.  I found a great one so I'm sending lots of ((((good vibes)))) your way.  Please keep us updated.  You mean so much to us all, your input, support, guidance...well I just can't say enough.  Keep resting and take care of yourself.  We're all pulling for you!

-K

[mommy2two2008]

UHAH - I'm here for you hun - just saw this and I am so sorry I did not respond...prayer is coming your way with a title wave of great vibes too.  Love ya dear.

[Smilerdeb]

Hugs Utah.....

Take Care  xxx