3-time skull base tumor survivor: ‘I wish I’d started treatment at UT MD Anderson’

My first experience with cancer was in December 2007, when I received an olfactory neuroblastoma diagnosis after noticing a blockage in my nose. I was treated successfully for it near my home in Kansas with a combination of surgery and chemoradiation.

Eleven years later, I developed a secondary cancer in that same area called radiation-associated osteosarcoma. This time, the cancer was in the bones around my left eye and sinuses. Again, I sought help locally and was treated successfully with chemotherapy and another major surgery.

At that point, I thought I was done with cancer. But in March 2020, I learned that the original cancer had recurred.

This time, the tumor was wrapped around my internal carotid artery, which is located deep inside the brain at the base of the skull. It was considered too dangerous to remove through surgery. The sole chemotherapy regimen I tried in Kansas didn’t work. My local doctors told me there was nothing more they could do.

That’s when I called UT MD Anderson.

Side effects brought me to UT MD Anderson initially

By that point, I’d actually been a patient at UT MD Anderson for about six months. Until then, though, I’d only received care there for a lingering side effect: peripheral neuropathy.

Once the neuropathy fully kicked in after chemotherapy, I couldn’t hold a pen or a fork. I also had debilitating pain in my legs and feet.  

At UT MD Anderson, I went through 10 days of something called scrambler treatment with anesthesiologist/pain medicine specialist Dr. Salahadin Abdi. It made a huge difference. I still have a little neuropathy left in my feet, but they’re just kind of numb and tingly now instead of actively hurting. That’s a big improvement.

UT MD Anderson gave me hope and a treatment plan

When I reached out to UT MD Anderson for help with an actual cancer diagnosis, though, I didn’t think there were any options left. I went to UT MD Anderson expecting to die. Instead, I left with hope and a plan.

At UT MD Anderson, I met first with sarcoma medical oncologist Dr. Maria Zarzour. She reviewed my records and scans and said that there were, in fact, other chemotherapy regimens available. I also met with head and neck surgeon Dr. Ehab Hanna, but he agreed that the tumor was inoperable. So, he referred me to radiation oncologist Dr. Jack Phan to discuss alternatives.

Dr. Phan specializes in irradiating areas that have already been treated with radiation therapy. That is a tricky and very specialized field, so I was grateful for his expertise. I trusted him when he recommended stereotactic body radiation therapy (SBRT), especially after Dr. Zarzour reassured me, “We’ve got this.”

My skull base tumor recurrence treatment

I had the first two rounds of chemotherapy at UT MD Anderson, followed by the SBRT treatments. Then I went home and had the last four rounds of chemotherapy there, under the close supervision of my care team at UT MD Anderson.

I still have some side effects from my original treatments. But I’ve shown no evidence of disease since August 2020.

Today, I’m just enjoying life with my wife and our kids. I’ve been able to return to work as a certified registered nurse anesthetist, too. And, I’ve watched all three children graduate from high school — the youngest one just last month. That’s something I never thought I’d be able to do. So, it’s been pretty special.

I really never thought I’d live to see this day. I worried for years that the cancer would come back and I’d be out of options. Now, I wish I’d started all my treatment at UT MD Anderson. If I had, maybe I wouldn’t have had to endure the secondary cancer or the recurrence. That’s why I tell everybody now to go to UT MD Anderson first.

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