I'm sitting on some news and I can just hardly stand it anymore. I wanted to have the full story before I shared, but I don't know when I'll have the rest of it. Like everything else, we'll just have to fake it as we bumble along.
Do you remember last week when I saw the new endocrinologist? On a whim we drew another tumor marker (thyroglobulin) just to see what it was doing before we treated with another radioactive Iodine treatment. The office called me yesterday to say that it was down from 5.6 to 2.4 ! I'm so excited that it's going down.
But that's where my good news ends. I don't know what the plan will be:
* Do we continue and treat since 2.4 isn't zero?
* Do we wait and see if it either continues to go down?
* Do we do a PET/CT and let that influence our decision?
* Do we just plan to stay on the Synthroid and do a Thyrogen-induced WBS?
* Do our ears hang low and wobble to-and-fro?
I hope to hear from them today.
I spent over an hour yesterday trying to research what the next step will be, but was unable to find a nice, clear algorithm that said if your thyroglobulin is X then you do Y. Apparently Tg is a touchy subject, and they won't even give a set range of good to bad because each separate lab has their own range based on their testing procedures. So I really don't know what to expect.
They asked me what I wanted to do, which I thought was a nice professional gesture. I deferred to the white jacket and told them I'd do whatever the doctor thought was best. If we know it's working and want to treat a suppressed 2.4 vs an unsuppressed 2.4 I'm game. At least we know the RAI is still working.
That's the extent of my news this morning. I have meetings all day long today, which should be a good diversion. It's nice how that works out sometimes.
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6 comments:
Great to hear this good news. VolMom
Ok What's a Thyrogen-induced WBS?
My Tg was 2.0. And my endo said my T3 and T4 were where he wanted them to be, which is under normal. I am thinking he WANTS me to be hypo my whole life just so the cancer won't grow back. That freaks me out on more than one level.
So do a scan and lets see if we can have our scans on the same day. :)
I hate when I try to research this stuff and get minuscule results. You probably have more references than me since you are in the med field. :P
I am glad the RAI is working for you though. Soon we will be back to normal? Can't decide if that's good or bad. :P
Well, that is some great news! I know you are relived to know your Tg has gone down, but so frustrated that there isn't a flowchart to explain what's next! Maybe that's something that will come with MORE RESEARCH!! (*#&@%^+ government cutting funds!)
I had a check-up today and I'll be having an ultrasound done next month (on that lump that they think is scar-tissue, just to make sure it really is) and Thyrogen-induced bloodwork, mostly to check Tg. Sounds like we might be Thyrogen-ed together!
WBS: whole body scan (usually after you're off your synthroid so that they can see exactly where the thyroid cancer is being naughty)
Thyrogen: medication (shots, actually) that we can take sometimes if you're cancer is technically gone, and your doctor wants to do a scan while you actually stay on synthroid
Thyrogen-induced WBS: a whole body scan that's induced by Thyrogen instad of being off of Synthroid
Ah, ok I am having a WBS first week of Apr. but he took me off Synth. and put me on Cytomel for 15 days and now I have nothing until the scan. The Thyrogen would keep you feeling better when you have to be off Synth. so I wonder if I could get me some of that. :P
Oh, man, that is so good!
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