Pre-diagnosis

Initial Symptoms

My students and I were getting prepared for spring assessments. After they came in from lunch, I said, “Let’s get ourselves ready and do a little brain break dance,” and then everything got heavy. The kids were moving, wiggling their arms, having a good time, and, for whatever reason, I couldn’t do it with them anymore.

I said, “Kids, you guys are going to have to sit down.” I had to hurry and sit down. Such heaviness and shortness of breath came over me out of nowhere. I thought, What is this? From that moment, I knew something was wrong, but I kept pushing past it. That’s what superheroes do, that’s what super teachers do. We push through it. We keep going.

That weekend, my boss came in and said, “We’re moving you to a more administrative role.” I said, “This is great. Now I’m excited again.” But when Monday came, I couldn’t carry my book bags into the office. It was such a short distance from the parking lot to the front door of the school, but I couldn’t do it. When I finally got in and started trying to catch my breath, somebody heard me wheezing and said, “Shyreece, you need to go to the ER.”

Diagnosis

Five doctors were standing in my room and they were as confused as I was. The hospitalist said, “We don’t know what’s going on on the surface, but I’m going to send this to the University of Michigan.”

He waited for the results to come back and when he got them, he said, “Oh my goodness.” He came in, held my hand, and told me, “You have cancer,” and then called the local cancer clinic.

AT13387 Clinical Trial

I joined a clinical trial of AT13387 (HSP90 inhibitor) times two cycles with concurrent crizotinib. I didn’t feel right with that one. I did everything that I was asked to do during the trial, but I withdrew due to significant diarrhea.

In the middle of the night, I would have to drink oral electrolytes quickly enough to stop the spasms. They were out of control. It was a couple of days or so after the cycle. I lived through that and didn’t like it at all. It didn’t give me a good quality of life. After I came off of it, I felt a little bit better, so I was able to enjoy my anniversary around that time.

After withdrawing and feeling a little bit better from the nausea and cramping, according to some scans around the time, there were improvements in some areas. For example, I used to have to do an abdominal CT scan, but I didn’t have to do that anymore, so something got better there, but I didn’t know what. I didn’t have to focus on getting some of the areas scanned.

After the trial, there was some metastasis. The University of Michigan said, “You can’t use crizotinib anymore, so you can stop taking it.”

Alectinib

I waited and had to fight for alectinib. I had to get it approved by insurance so that I could start taking it. The doctor said he was fighting behind the scenes with me to get the insurance to approve it so that I could start taking it. Even though I started panicking, he said, “Shyreece, it’ll be worth the wait.”

Biomarker Testing

Something told me that I did not have regular lung cancer. Nothing made sense to me and yet I was this close to dying. Everybody needs to understand what biomarker testing is and how to read certain test results when they come back. When I looked into it, I learned that there were different types of lung cancer. It opened up a whole new window of options.

In my situation, it seemed like biomarker testing was already done but the results weren’t disclosed to me. The test that the hospitalist sent out had some information in there. Stanford didn’t do a repeat biopsy. They trusted all the records from the University of Michigan. When they looked at them, they highlighted: stage 4 ALK, rearranged bronchogenic. That’s when I first heard those terms.

Six years went by before I found out what biomarker testing was. I learned that through LUNGevity, who heard about me through an ALK-positive online cancer group. The doctor at Stanford said, “Shyreece, have you heard of the ALK Positive group? Look them up. I heard that they just had their first summit.”

I started digging. Then-president Gina Hollenbeck and I started conversing. Sad to say, she’s no longer here. She lived eight years with the same cancer that I have. I have a lot of stories about the loss of friends with the same biomarker. That’s how I started talking about biomarker testing and doing a lot of the advocacy work that I’m doing now.