Living With Thyroid Cancer: Lori’s Story [video]

Video author: Streaming Well
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Video Transcript

Streaming Well

Lori was diagnosed with thyroid cancer in 2008. I was actually sitting at my desk one day and ran my hand down my neck and realized I had a lump in my neck. I went immediately to my primary doctor, and he said, "Oh, it's probably just a goiter. We'll have an ultrasound done, and we'll figure out what it is. I didn't know about what my thyroid gland was or what it did. I didn't realize it was the thermostat of our bodies and controls our heart rate, all these important things. I never really thought about my thyroid gland until that moment.

Lori was told she needed surgery.

I had my right lobe of my thyroid with the tumor removed. I think it was June 9, 2008. They discovered that it was Hurthle cell; it was malignant. Nine days later I was back in having a second surgery.

Surgeons removed the tumor without affecting her vocal cords.

For someone like me who is an A-type, it's like, okay, what do we do next? what do I have to do to manage this? So 3 months after my surgery I had radioactive iodine treatment. I had it done, and then after that we kind of watched and waited. Unfortunately, some thyroid cancers are not reactive, they're non-avid as they call it, to the radiation therapy.

The cancer had spread to her lungs.

We discovered that my measurement of tumor activity was high, it was elevated. The marker is called thyroglobulin. I went and had scans, and it was identified that, in fact, there was activity in my lungs.

Lori received an iodine treatment which unfortunately did not work. She then began a phase 1 clinical trial.

It was an oral liquid that I drank twice a day. It was nasty, it tasted terrible, but, you know, you do what you gotta do. After 6 months they saw that there was some change in in my tumors, so we went off of that one.

Lori's tumors grew despite the treatment.

A month later I joined another trial which was an IV trial where I had to go into Sloan and sit and have an IV infusion, and that one didn't seem to be doing anything either. At one point I felt like I was being handed a deck of cards; pick a trial, any trial. You know, this one could give you hypertension, this one could give you diabetes, this one could give you heart palpitations, this one--no, it just went on and on, and I said, "I'm taking a break."

Finally Lori's husband found a clinical trial that looked promising.

He was on clinicaltrials.gov, and he said, "This one says says it's for thyroid cancer specifically." So I sat down and emailed the 2 research nurses that were listed on clinicaltrials.gov, and within 15 minutes I had a phone call from the doctor who was running the trial. I saw her in January of 2010, and since then I've been on--I was on an off-label prescription with her. Within that time period I had some issues with side effects and things that happened to me. The side effects of the drugs that I'm currently taking began fairly harshly. I had tremendous blisters on my feet, so I could hardly walk. My face was very red, and my skin was red. My hands were peeling, and my hair was starting to fall out.

Lori has made drastic changes to her diet due to digestive issues.

I think of the list of foods that I can't eat now, and it ranges from fresh vegetables to red meat to chocolate. Carbonated beverages bother my stomach. Milk--I'm lactose intolerant now. So, you know, you look at what you're able to eat and the choices you have, and it's a bummer, you know, because I'd love to eat a fresh salad, but I can't. I've looked into juicing to see if that might help me be able to get nutrients, and the number one concern is to maintain your weight and not lose weight, and when you're having chronic diarrhea, you lose your calories instantly. That's when I introduced myself to yoga. I was told by a friend, "It will help you heal. It will help you feel better. It will help center you," and she was right. I ramped up singing again in church, eliminated some of the things that I had on my to-do list, like being on different foundations and teaching Sunday school, and it's not easy, it's not an easy thing to balance.

Lori received support from many sources including...www.thyca.org and her family. I'm a big believer in no secrets. What I shared with them is I'd been diagnosed with thyroid cancer. I told them I didn't know much about it, you know, I didn't know what to expect, I didn't know what that meant. I knew it wasn't good, but I told them that they knew that I was a fighter. My husband's been amazing through this whole process. You never expect this to happen in your marriage. You know, we're a team, and he holds me up. I couldn't ask for a better partner.

You know, one of the things in my life that's very important to me is singing.

'Cause what if your blessings come through raindrops, what if you're healing comes through tears?

I hope that by being part of a clinical trial that I have played a role in making a difference for future patients. My idea of what's going to happen in the future is that we're going to find a cure.

Many thanks to ThyCa for helping us to tell Lori's story.

This activity was initiated and supported by Eisai.
Streaming Well
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