Barry Hollander, Guest
It all began with the “C” word. Cancer. Then I’ve moved up a notch to the “M” word. Metastasized.
I’m not sure which is worse.
First let me give you the news hook — my thyroid cancer, diagnosed in 2013, metastasized to my lungs. It’s not lung cancer, it’s thyroid cancer. In the lungs.
Second, here’s the rising tension — there’s no cure.
Well, there is a cure for thyroid cancer. It’s called surgery to remove the thyroid and any cancerous cells, followed by radioactive iodine treatment, known as RAI for short. Thyroid cells, cancerous or otherwise, love iodine like I love a good cup of coffee. You go on an iodine-free diet, do some other stuff, and then visit the hospital where a nice person in a white suit lugs in a lead container and scurries away. Your mission? Open that container and swallow a pill and let iodine-starved thyroid cells soak the stuff up. The radioactivity kills them.
Works most of the time, too, except when it doesn’t.
I’m in the doesn’t category, and I’m not alone. This is a shout out to all my Facebook friends in the RAI Resistant Thyroid Cancer group. If you’re out there and RAI failed you, ask to join this group. It’ll help.
It’s commonly called being non-avid, although in the scientific literature they have a longer name: iodine refractory thyroid cancer. When this happens, prognosis is “not good.” Here’s some wording:
The majority of patients with differentiated thyroid cancer are cured with standard primary treatments including surgery, radioactive iodine and TSH suppression. A small proportion of patients who develop radioactive iodine-refractory metastatic disease have few treatment options.
“Few treatment options.” Nice.
Thyroid cancer is sometimes called “the good cancer.” Anyone says that, you smack ‘em upside the head or, even better, karate chop them in the throat — near the thyroid, if possible, because there’s nothing good about this cancer. There’s surgery at your neck — never a choice — and people often lose the use of one vocal cord or suffer other complications. And then there’s the RAI treatment, which can screw up many things, including whether your salivary glands ever work again after swallowing 150 or so millicuries of radioactive iodine. And this assumes the RAI does its job because, if it doesn’t, you face a long fight against cancer that wants to set up shop in your wind pipe or maybe spread to your lungs, your bones, your brain. Good cancer? Hit that person. Hard.
After the second RAI, my local endocrinologist said it failed to “light up” in a body scan. In other words, remaining thyroid cells (cancerous or not) failed to soak up radioactivity. In other words, not only did I swallow a radioactive pill while hospital workers stayed safely away, I didn’t even get a super power for my trouble, so no chance at being an Avenger.
We know there’s cancer floating about because a lab test identifies thyroglobulin in my system, which only thyroid cells or, more likely, cancerous thyroid cells, can produce. So when the RAI body scan fails to find anything, my endo ordered an ultrasound of my neck (negative, all good there), and a PET scan.
Bingo. The PET finds stuff on my lung. Not huge amounts, but definitely there, definitely active. If you’re interested, they’re mostly on the lining of my right lung, near the middle. I can send you a picture.
I get this phone call the day after Christmas, 2014. Nice of him to at least let me enjoy the holiday. He refers me to a local oncologist, which makes sense. I visit the oncologist, we talk a few options, including the one drug at the time (sorafenib) approved by the FDA to slow down tumor growth for non-avid thyroid cancer patients. Sure, it has nasty side effects and only works for a while before the cells adapt, but you can’t blame him for suggesting it because there’s damn little else except, shortly later, the FDA also approved lenvatinib, a better choice.
Later the oncologist phones me with an update and I ask him, “So, how long do I have?” I expect the usual doctor answer — vague and full of hope, or at least some bobbing and weaving and docspeak.
Two to four years, he says.
Oh shit. I have an expiration date.
But “we’re going to take care of you.”
Oh great, that’ll comfort my wife and kids.
Experts Are Hard To Find
Let’s be fair. When my endo referred me to local oncologist I asked my endo: “So this guy specializes in non-avid thyroid cancer?” and my local endo (who is damned good) replied: “No one around here specializes in that.” He just wanted me to see someone in a hurry, so let’s not pick on the oncologist. He’s a nice guy, apparently good with other cancers, but this is not his specialty. And the stats kinda support him. The stats are not great for a five-year survival rate, though to be honest the stats are misleading and come from data collected long before some of our newer options.
Still, to be double fair, while we may fault the local oncologist’s phoneside manner, he may turn out to be an accurate health prognosticator. Check in with me again in January 2019. If you can, that is.
Okay, so back when the endo told me of my lung mets I asked him (and the oncologist later): “Where would you go if you were in my situation?”
They both said MD Anderson, in Houston, one of the cancer centers in the world. So we visited a few weeks later and wow. I mean, just wow. I can’t easily describe how remarkable the place is, the doctors you see, but they’re the ones who author cutting-edge cancer research published in the leading academic journals. My doc is one of them. It’s a huge complex with a constant flow of patients in and out. It’s a place of hope. Yeah, that’s kinda sappy and I don’t usually do sappy, but it’s the only way to describe it.
Again, let’s be clear, there’s no cure, there’s no chemo or radiation treatment that will make this thing go completely away. I may have the best docs in the world at the best hospital in the world, but they’re limited by the tools in the toolbox. Thyroid cancer isn’t among the sexy cancers; it’s not getting tens of millions of research dollars. My docs are stuck with the medical equivalent of a small set of screwdrivers, a worn-out hammer, and a rusty pair of vice grips. Even the meds we have were originally designed for other cancers.
We’re the orphan of cancers, the ones stuck wearing hand-me-down drugs.Sadly, the next scan found the #Thyroid cancer was progressing. This became my time as an official lab rat Click To Tweet
So at MD Anderson I was poked and prodded and scanned for three amazing days. Let me explain how it worked:
Day 1: We meet first thing that morning with my lead doctor. Okay, her and her staff. Hell, the doctors have doctors in this place. They’ll spend as much time as you want to talk it out and, honestly, how often can you say that? They explain how the next coupla days will play out. Out the door, off to scans or bloodwork or to find the Starbucks on the first floor. Because, ya know. Coffee.
Day 2: More scans. Also, meet with another couple of doctors, such as a surgeon should it come to that. Also we can now find our way around the place without getting lost. Yes, it’s that big.
Day 3: Another scan, then meet my lead doctor again. She sums up what they know, what they see, and potential approaches. Oh, at MD Anderson they know your scan results instantly. It’s that fast. Also their scan found a nodule missed by my local hospital’s scan, in a lymph node below my sternum notch. Sigh.
So what’s the plan, doc?
She says come back in three months. We have a quality baseline now. Return and we’ll scan again to learn how much, or how fast, the cancer is growing. If it “behaves itself” (her phrase) we may do nothing more than “watch and wait” for a while.
That beat having an expiration date.
My Short Time As A Lab Rat
Sadly, the next scan found the cancer was progressing. This became my time as an official lab rat.
I signed away my precious bodily fluids, my tissue, and all the data that can be generated about me when I agreed to participate in a clinical trial. Technically this is called
2013–0918 (clinicaltrials.gov NCT No: NCT02034110)
which is a fancy way of saying it’s a “Phase II, Open-label, study in subjects with BRAF V600E-mutated rare cancers with several histologies to investigate the clinical efficacy and safety of the combination therapy of Dabrafenib and Trametinib.” Which is another fancy way of saying I’ll be taking pills designed to slow or shrink thyroid cancer tumors that have metastasized to my lungs.
My job was simple, just wash down a couple of pills a day and return over and over and over again to Houston for scans. Just meeting the study criteria was daunting. I had to visit the doc, sign a consent form, do blood work, EKG, chest X-ray, echocardiogram, and then visit skin, heart, eye, and lung doc. The skin doc was the most fun. Two female doctors gave me a thorough going over and when done they asked if they should leave the room while I dressed.
“Why bother” I said. “You’ve seen everything there is to see.”
And that’s just to see if I met the study criteria, which I did, and I then had to fly to Houston every two weeks for checkups, at least for a couple of months, all on my dime.
Why participate in a clinical trial?
First, it helps medical science find the best approaches for a condition. Yeah, I was a lab rat, a guinea pig, but the drug had been used in other types of cancers with some success. This is a bitchy point for me. Thyroid cancer, the so-called “good cancer” is often dealt with by surgery and, maybe, radioactive iodine pills. For some of us, though, that doesn’t work, and thyroid cancer is the ugly stepchild of cancers. We get the hand-me-down drugs, the stuff that worked elsewhere.
Hello, NIH. I know we’re not one of the sexy cancers. No breasts involved. But spread some of the grant wealth our direction, please. People are dying.
And then the bad news. Although I’m BRAF+, the genetic mutation often found in aggressive thyroid cancer, this BRAF inhibitor didn’t really work for me.
So now I’m on Lenvima (lenvatinib). It is working. My first scan after three months on the drug showed remarkable tumor shrinkage. My Tg, that cancer marker, went from 6,700 to 57. My second scan three months later found some tumors shrank, others remained stable. Other than the lousy, and often colorful, side effects, all is okay.
And every time I visit, which is every three months, I get to go through Scanxiety all over again.
But this pill is just buying me time. I appreciate that, but what we need, medical researchers, is a good Plan B.
March 2013: Lost my voice. Turns out, a thyroid nodule is pressing against the nerve that controls my left vocal cord. Yes, that turns out to be cancer.
July 2013: Thyroid removed — including that nerve — plus some lymph nodes. Voice lost.
September 2013: First RAI treatment. Whole body scan afterward. Lights up modestly, meaning it’s killing off some stuff.
December 2013: Surgery to recover voice. Basically a Gor-Tex implant. Successful.
September 2014: Second RAI treatment because my lab tests say there’s something still in there. Another whole body scan. Fails to “light up.”
November 2014: Neck ultrasound. Nothing seen.
December 2014: PET scan (finds lung mets)
January 2015: Visit local oncologist. Also, later in month, MD Anderson.
May 2015: Return to MD Anderson.
June 2015: Possible inclusion of a clinical trial at MD Anderson. Will know more soon.
August 2015: Included in a clinical trial taking dabrafenib.
September 2015: First scan, some tumors shrank, others remained stable.Woot!
October 2015: Next scan, tumors grew. Why? Still to be determined. Possibly my cancer mutated, or possibly the 80mg a day dose of omeprazole (Priolosec I was on for reflux affected absorption of the med. That’s 4x the usual dose. Moved to second arm of the study (dabrafenib and tramatenib).
November 2015: Return to MDA for a biopsy of my lung mets to discover if they fit the genetic profile seen earlier. In other words, they’ll stick a needle in my chest and suck stuff out. Why can’t they just do that for all the cancer? Because it doesn’t work that way. If they’re the same, maybe the Prilosec is the culprit. If they mutated, I’ll have to shift to a different, more harsh, med full of even nastier side effects.
February 2016: Scans find dabrafenib isn’t working for me, I’m moved to Lenvima.
May 2016: First scans leave my MDA doc giddy, they’re so good.
August 2016: Second set of scans are good. Drug still working
January 2019: Expiration Date, if my local oncologist is right…..
I hope to send him a card at that time that says, channeling Monty Python, “I’m not dead yet.”
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It will be 1 year on Nov. 15, 2016 since i had my thyroid removed because of Papillary Thyroid Cancer. I’ve had ringing in my ears, poor circulation in my hands and feet, constant twitching of my legs and fingers ever since. Despite my inquiries to my Dr.s, no one has ever given me an explanation. Can anyone give me an answer? Has anyone else ever had this happen to them?
I’ve decided against the radioactive iodine. If I had my time back, I wouldn’t have had the surgery either.
1) I would be concerned that the thyroid surgery that you had MAY have damaged the parathyroid glands located behind the thyroid gland. There are other causes, too. However, the result of damage to the parathyroid glands is a lowered Calcium level. Depending upon the level of deficiency that the calcium has reached, symptoms may include tetany, which causes muscular spasms. Other symptoms may produce milder symptoms such as muscular irritability and numbness of the fingers, feet and around the mouth. Twitching of muscles may also be present in the nose and around the eyes.
A blood test and other diagnostic methods can determine if this is what is causing your symptoms. Treatment can reverse these effects. THere are other. associated issues that could develop if you do have a calcium deficiency (from whatever the cause).
See your doctor and describe the symptoms that started AFTER THYROID SURGERY.
2) You need to read up on the radioactive iodine. My advice, based upon numerous experiences within my own family’s five cases were CRITICAL in diagnosing and killing remaining cancer cells after surgery. Incidentally, two of my family members waited too long for surgery and one developed metastatic lung cancer and the other lost vocal chords, part of the trachea and now speaks with a prosthetic voice and has a hole in his neck that he must plug with a finger to talk and must beware of liquid entering the hole.
You made a GOOD decision having the surgery!
My prayers are with you!
Dianne , All those things you mention I have had issues with too. I too , had papillary carcinoma stage 3 in 2007.
Barry , I truly hope that they find a cure for you and others facing this terrible cancer. I hope you are doing as well as can be and please keep us posted.I am very concerned about a nodule in my neck that every scan,ultra sound keeps coming back saying things are fine. I wonder if these tests just aren’t picking up cancer. But I am at the point that I won’t dwell over it. If the cancer is back I guess I will just die before they catch it again. I have salivary infections all the time and that isn’t normal. Never had any of these issues until diagnosed with thyroid cancer in 2007.