Rick was diagnosed with thyroid cancer in 2004 and did not respond to his initial treatments. In this video he gives us an insight into what it has been like living with the condition.
Lori was diagnosed with thyroid cancer in 2008. Until then she had never thought about her thyroid gland. In this video she details the things that have helped her to deal with her condition.
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On Screen Text: Lori was diagnosed with thyroid cancer in 2008
I was actually sitting at my desk on day and ran my hand down my neck, and realised I had a lump on my neck. I went immediately to my primary doctor and he said, “oh it’s probably just a goiter, well have an ultra sound done and well figure out what it is.” I didn’t know about what my thyroid gland was, what it did. I didn’t realise it was the thermostat of our bodies and controls our heart rate and all these important things. I never really thought about my thyroid gland.
On Screen Text: Lori was told she needed surgery
I had my right lobe of my thyroid, with the tumor, removed. I think it was June 9th, 2008. They discovered that it was Hurthle Cell and it was malignant. 9 days later I was back in having a second surgery.
On screen text: surgeons removed the tumors without affecting her vocal cords.
For someone like me, who’s an A type, its like ok, 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, had it done, and then after that we watched and waited.
Unfortunately, some thyroid cancers are not reactive, they’re non avid as they call it, to the radiation therapy.
On Screen Text: 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 I fact there was activity in my lungs
On Screen Text: Lori received an iodine treatment which unfortunately did not work.
She then began a phase 1 clinical trial.
It was a oral liquid that I drank twice a day. It was nasty, it tasted terrible, but you know, you do what you’ve gotta do. After six months I, they saw that there was some change in my tumors, so we went off of that one. A month later I joined another trial which was an IV trial, where I had to go and sit and have an IV infusion. That one didn’t seem to be doing anything either.
At one point I felt like I was being held 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… You know it just went on and on and I said Im taking a break.
On Screen Text: Finally Lori’s husband found a clinical trial that looked promising.
He was on clinicaltrials.gov and he said this one looks like it’s for thyroid cancer specifically. So, I sat down and emailed the two research nurses that were listed on clinicaltrials.gov and then in 15 minutes I had a phone call from the doctor who was running the trial. I saw her in January of 2010. Since then I was on an off label prescription with her. Within that time I had some issues with side effects and things that happened to me.
The side effects of the drugs that I am currently taking began fairly harshly. I had tremendous blisters on my feet so I could hardly walk, my face was very red, my skin was red, my skin was peeling and my hair was starting to fall out.
On Screen Text: Lori has made drastic changed to her diet
I think of a list of foods that I cant eat now and it ranges from fresh vegetables, to red meat, chocolate, carbonated beverages bother my stomach, erm,,milk, I’m lactose intolerant now. So if you look at what you’re able to eat and the choices you have, and it’s a bummer because Id love to eat a fresh salad, but I can’t.
I’ve looked in to 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 it just, 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’ll help you feel better, it’ll 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 by being on different foundations and teaching Sunday school, and its not easy. It’s not an easy thing to balance.
On Screen Text: Lori received support from many sources including… (ThyCa logo animation) and her family
I’m a big believer of no secrets. What I’ve shared with them is that I’ve been diagnosed with thyroid cancer. I told them I didn’t know much about it, you know I didn’t know what to expect, what that meant. I knew it wasn’t good but I told them that they knew I was a fighter.
My husband has been amazing through this entire process. You never expect this to happen in your marriage. You know, were a team, and he holds me up, I couldn’t ask for a better partner.
One of the things in my life that’s very important to me is singing. I hope that by being part of the clinical trial, I have played a role in making a difference for future patients. My idea for what is going to happen in the future is that we are going to find a cure.
10984 Revised March 2013comments powered by Disqus