Tag Archives: Thyrogen

Cancer-Free…I Guess.

19 Jul

Today was a very, very long day at U of M. I was really hoping to announce “100% CANCER-FREE!” after my scan. Instead, what I can say is: nothing overtly bad showed up on my scan, and it’s up to me if I want to do any further treatment.

Let me explain…

When most people have papillary thyroid cancer, they follow the protocol below:

  • Total thyroidectomy
  • Medication withdrawl and low-iodine diet
  • Radioactive Iodine Ablation (RAI) for any remnant thyroid tissue (normal or cancerous..it all gets destroyed)
  • Follow-up whole-body scans to look for iodine uptake. Since all thyroid tissue should have been ablated with the RAI treatment, any uptake would be deemed “bad.” No uptake would get a gold “cancer-free” star.

Well, naturally, when I was diagnosed, I weighed all my options and I was not satisfied with the risks associated with the average protocol. I based my decision on the American Thyroid Association Guidelines for Thyroid Cancer Treatment. So my protocol looked like this:

  • Total thyroidectomy
  • Very long wait for Thyrogen injections so I didn’t have to endure medication withdrawl
  • Low-iodine diet and whole body scan
  • Follow up with ultrasound and bloodwork

Today, I had three total scans. The first two were 20 minutes each. I went in feet first, and I wasn’t restrained. I popped two Xanax, focused on my music and I was fine. Afterwards, I met with Dr. W, the nuclear medicine doctor. He said he was concerned about the level of iodine uptake he saw on the first scans, and he wanted me to do 3D image followed by a CT scan. He made it clear that he thought I should have done RAI in the first place.

Hysteria ensued.

I really couldn’t hold myself together. I became irate. I couldn’t stop crying. After waiting for another full hour, I got back on the scan table. This time, they had to restrain me and strap me in. I was told I was not allowed to move. Tears were streaming down my face and I felt like I couldn’t breathe, so I popped another Xanax. I sound like a drug addict, I know…but look at what they did to me! You would need prescription-grade relaxation too!

The nurse acted like I was crazy for needing my iPod. I am so glad I ignored her. I desperately needed it to cope!

After 40 minutes in this God-awful contraption, I got additional information. Dr. W said the iodine uptake was probably normal remnant thyroid tissue that my surgeon left behind. This happens frequently and is nothing to worry about. There was nothing abnormal in my lymph nodes, lungs or liver (where thyroid cancer frequently spreads). However, since he is a nuclear medicine doctor, he thinks I should just do RAI to ablate all the remnant thyroid tissue, whether it is normal or not. This would in no way improve my outcomes, and would not even guarantee that I wouldn’t have a recurrence. But it sure would make the nuclear medicine doctors’ diagnostic job a lot easier.

Dr. W acknowledged that there is good data on both sides of the RAI decision, and left it for me to discuss with my Endo, Dr. E, next week.

So what can I tell you? I have no bad news. And that, my friends, is good news.

Now, I’m off to eat dinner. I have a serious cheese deficit to make up for.

LID: Week One

5 Jul

My first whole-body scan for thyroid cancer is scheduled for the week of July 16. It’s five-day party at U of M. What a great summer vacation!

Day 1: Thyrogen injection to artificially raise my TSH

Day 2: Second Thyrogen injection

Day 3: Drink tracer dose of radioactive iodine

Day 4: First hour-long body scan (pass the Xanax!)

Day 5: Second hour-long body scan (pass the Xanax again!)

In preparation for my scans, I have to be on a low-iodine diet (LID), which began on July 2. Four days down, 15 more to go. It sucks. Really, really bad. Those of you who know me know that I am an extremely picky eater. And all my core foods are now forbidden. As a reminder, the crappy low-iodine diet rules are:

  • No dairy at all (cheese is all I think about).
  • No bread unless I bake it myself with no-iodine salt (that’s not happening).
  • No soy (so no protein shakes).
  • No restaurant food at all (I get takeout A LOT).
  • Very small amount of meat, and no seafood.
  • Nothing that has natural iodine content, like the skins of potatoes and spinach.

Here is how I am surviving:

Breakfast: Cream of Wheat and black coffee. Never thought I could miss half and half so much! I do get to put sugar in the Cream of Wheat, so that helps.

Lunch: Salad with homemade lemon vinaigrette dressing and grilled chicken. Still get to have my Coke Zero. Hooray!

Dinner: Imjadara. Thank you to my mom for making me this Lebanese dish! It looks gross, but it is awesome. Lentils, onions and wheat. I even listed it as my favorite food when I was in kindergarten! Just wish I could have some pita along with it.

Snack: I love movies, and therefore love popcorn. Fortunately, I have never been a big fan of butter on my popcorn. So when I air-pop and add kosher salt, it doesn’t taste too bad!

I can also eat fresh fruit and vegetables, so I snack on those too. I am logging everything I eat into MyFitnessPal, and I am consuming about 1200-1400 calories a day, which is pretty typical for me. However, the food I am eating is just not very satisfying, so I am still hungry all day long. I am still running and obsessively weighing myself, because I figure if I still don’t lose weight doing this diet, than my endocrinologist can’t argue with me, right? I can’t do any medication changes until I am done with this experience, so this is truly my last hope to dump the extra pounds before my upcoming thyroidectomy anniversary. I have heard good things about eliminating dairy and bread as a way to lose weight, so I am hopeful. It’s the only thing that keeps me going!

In the meantime, please don’t eat pizza or enjoy Starbucks within 20 feet of me. You may get pounced.

“We have your Thyrogen prescription.”

31 Mar

I just got off the phone with Walgreens Specialty Pharmacy in Ann Arbor. My Thyrogen is in. That means I am finally going to have my whole-body scan to see if there are any remaining thyroid cancer cells in my body. My bloodwork hasn’ t shown any signs of tumor growth, but the scan will look at the cellular level. I nearly had a meltdown on the phone…it was so, so weird. They basically just called and asked me for my birthdate before they would even reveal why they were calling, and then I had to pay my $250 co-pay over the phone before they would ship it to UofM. Maybe it’s the anxiety, but that REALLY annoyed me. I told the pharmacist, “This is an insane way to deal with cancer patients that have been waiting 8 months for medication. I want to hang up on you, but I am afraid you’ll give my Thyrogen to someone else.”

Well, you survivors out there know what this means…low-iodine diet. Here are just a few items I will have to part with for two whole weeks:

  • Milk
  • Cheese
  • Yogurt
  • Chocolate
  • Bread
  • Salt
  • Pre-packaged or restaurant food of any kind

I seriously feel like crying. I probably won’t even lose weight. Speaking of, there has been ZERO change from upping my Synthroid to 125 mcg, so I made an appointment with a holistic doctor. She’s going to try to compound T3/T4 thyroid medication for me, but I don’t have my blood tests back yet to determine the exact ratio. I was supplementing with iodine and selenium (it wasn’t effective), and she told me to stop. That’s a good thing, since now I have to deplete all of the iodine in my body.

Okay, let’s try to be positive. Ideally, I will go on this stupid diet for two weeks, get two injections, and then get the scan over with. (Hopefully there is no iodine in Xanax, because I am not going in that giant tube without it!)  There will be no microscopic cancer in my body. Then I will start on my perfectly compounded (and probably very expensive) thyroid medication, and by summer I will be completely back to normal.