Thyrogen Vs. Hypothyroid... Thoughts? And Rai Questions.

I can't decide which way to go.  Anyone want to share their Thyrogen testamonies?  Or the hypo testamonies although I can imagine...

Also wondering if everyone HAD to have a therapuetic dose of RAI following their initial scan.

And lastly if everyone who has had RAI experienced the salivary gland/tongue/loss of taste & appetite issues or if it's not all that common.

All the best to everyone!

I have been through RAI twice - once right after surgery and then 1.5 yrs. ago.  The second time i received the thyrogen shots.  I am currently awaiting my third RAI in the next couple weeks and i will be receiving the thyrogen shots.  the only thing i am changing this time is i am taking a few weeks off from my job.  it took me about a month to really feel better.  it was bad, but if i know if i would not have gone right back to work and took some time to recoup my physical and mental status it would have been easier. 

When talking about the reaction to the thyrogen shots.  each person is different.  i was tired and had nausea for about a week.  i drank alot of water to clear my system and also sucked on lemon drops for the saliva glands.

if you are looking into this procedure, i suggest you talk with your dr. ahead of time because we have great insurance and it takes time to get the shots (i believe there are only a couple places in the U.S. to get them from).  Your dr. will give you instructions like the shots must be exactly 24 hours apart.  why? i don't know nor did i bother to ask.........

 good luck and keep us posted on your choice

j

I have struggled with this decision as well. I had a TT on 5/21/08 due to 2.2cm papillary tumor, and am scheduled to have a 100 mCi RAI treatment in July for remnant ablation. While the evidence suggests a potential false negative rate of 20%+ for the diagnostic use of Thyrogen-assisted RAI, it appears that a lot of doctors and many patients feel the benefits (not going hypo) outweigh the drawbacks (potential false negative). However, in my mind, the post-surgery remnant ablation procedure is a totally different animal altogether. I do not want to take a 20%+ chance that the remnant ablation does not work. If there was a chance that the procedure would not work because of the use of Thyrogen, I would go through "hypo-hell" to get the job done. Crikey, it just got approved by the FDA for remnant ablation 6 months ago.

On the othe hand, everything I can find on the web suggests that with regard to therapeutic doses, Thyrogen-assisted RAI is just as, if not more, effective as hormone withdrawal. Also, it has been approved for use in this indication in Europe since 2005. I have also heard that major cancer centers such as M.D. Anderson and Sloan Kettering are using Thyrogen for remnant ablation almost exclusively (this is second-hand and I can not verify this).

At the end of the day, I think I have decided to use the Thyrogen. I guess there is a risk with every decision, but for me, there is enough positive evidence out there to support the use of it. Keep us informed about your decision!

Tim

Hi!  Previous posts have outlined the pros and cons of using Thyrogen. I've done it both ways and its a no-brainer for me.....Thyrogen hands down!!!!  Hypo hell was just that for me and it took me months to get back to normal.  I'm a 53 yo "young" women and really active.  Going hypo last summer of '07 knocked me to my knees for at least 4 months.  Used thyrogen this last April for my 1-year scans after a tracer dose and I had zero side effects.

As for the initial therapeutic RAI....I was so miserable while hypo that the RAI was little more than a footnote in my saga with no additional symptoms.  I followed the protocol after RAI to protect my salivary glands....didn't help because I'm still bothered on one side, but its minimal and beats the alternatives.  I lost my sense of taste for about a month after RAI...great weight loss plan....but it returned and so did the weight I lost!  At my 1-yr eval, my endo at the med center and I had a long discussion about my whole ordeal and she felt, in years to come, the medical community would talk about "what they did to those poor souls being treated for ThCa back in the day and how inhumane it was to make them go hypo when they could have been using thyrogren!"  Couldn't help but agree with her!     :O)        SUE

 

On 6/5/2008 MonicaDanielle wrote:

I can't decide which way to go.  Anyone want to share their Thyrogen testamonies?  Or the hypo testamonies although I can imagine...

Also wondering if everyone HAD to have a therapuetic dose of RAI following their initial scan.

And lastly if everyone who has had RAI experienced the salivary gland/tongue/loss of taste & appetite issues or if it's not all that common.

All the best to everyone!

I am a HUGE advocate for Thyrogen.  This was my first round with RAI.  My surgeon and internist recommended Thyrogen. My endo was signed up to use it but hadn't.  He was torn.  So I did my own study.  I personally spoke to doctors at Sloan Kettering, Indian University school of medicine (their head endocrinologist), and James Graham Brown Cancer Center in Louisville KY.  They ALL use thyrogen exclusively now.  What's wonderful is how medicine progresses and there's always cures and new solutions right around the corner.  I believe I was lucky enough to have surgery after December 2007 when it was approved for all by the FDA.  It's been used extensively for 20+ years though.  My endo finally attended a seminar held by Sloan Kettering and Genzyme and was convinced I was a perfect candidate.  YEAH!!!  It was a cinch; zero side effects and I felt good through the entire procedure.  Many endos don't even require the LID with thyrogen.  My endo wasn't one of them but that too will become common practice with time.  If your cancer has is not believed to have spread beyond the neck and lymph nodes, I say go for the Thyrogen.  You won't regret it.

As for the salivary glands and taste buds; it's more common that we wish it would be.  I was diligent about the lemons, so I had no problem with my salivary glands.  But I have lost taste buds.  it's four weeks now and it's even getting worse at times; food tastes just nasty.  I haven't heard from anyone who hasn't had this side effect.  I'm told my the nuclear med people that less than .1% get away with no side effects of any kind to RAI.

I got the Thyrogen within days.  If your hospital orders it they will charge you $17,000.  If your endo gets it straight from Genzyme, it will cost $1700.  My insurance covered it with zero deductible and no questions.  This is an example where everyone reacts differently.  I have only missed 1 1/2 weeks work and that was after my surgery.  During the procedure I felt good; no side effects.  I was a little tired a little earlier, but no big deal.  So it will all depend on how your body reacts to things.