Glioblastoma caregiver: MD Anderson has helped my wife survive brain cancer twice

It’s unlikely you’re ever going to meet anyone quite like my wife. For one thing, Susie is a two-time brain cancer survivor. That alone makes her amazing. But she’s also still alive — more than 20 years after her initial diagnosis. That makes her unique.

We were so worried when Susie’s tumor was first discovered. Our kids were both really little back then: just 3 years and 2 months old. Susie feared, if she died, they wouldn’t know or remember her.

Now, our youngest is 21 and studying biochemistry in college. Our eldest recently earned a master’s degree in biomedical engineering and is working in a neuroscience lab in Boston. Susie and I have traveled around the world and back. It’s all been possible because of the folks at MD Anderson.

A brain cancer diagnosis

Susie was pregnant with our second child when she started having problems with memory, word association, poor appetite and headaches. Doctors attributed those symptoms to a challenging pregnancy. But the symptoms got even worse after she gave birth.

When the headaches became unmanageable, I took Susie to a local emergency room in Austin. The doctor there thought she had a bad sinus infection. I knew her symptoms were something more serious, so I pushed for a CT scan. Finally, the doctor agreed. The scan showed a tumor the size of an orange in the left temporal lobe of Susie’s brain.

After having an MRI, Susie met with the hospital’s neurosurgeon. He told us Susie’s brain tumor was the largest he had ever seen, and he was amazed she was still able to walk and talk. We asked him what he would do if Susie were his wife. He said he’d go to MD Anderson, because the doctors there specialize in these kinds of tumors and treat them daily. So, we arranged for a transfer to MD Anderson’s Brain and Spine Center.

Why my wife chose a clinical trial for her brain cancer treatment

At MD Anderson, we met with neurosurgeon Dr. Raymond Sawaya, and later, with neuro-oncologist Dr. W.K. Alfred Yung (now retired). Dr. Sawaya performed a craniotomy to remove the tumor on Jan. 13, 1999, and Dr. Yung confirmed that Susie’s brain cancer was a grade 3 anaplastic oligoastrocytoma (a mixed glioma).  

Dr. Yung recommended we follow up surgery with a Phase II clinical trial for a new chemotherapy protocol, followed by six weeks of radiation therapy. The trial had recently advanced to Phase II and involved a new drug called temozolomide. It was taken orally along with an intravenous chemotherapy called carmustine (BCNU).

That was a scary time, but Dr. Yung patiently explained how to look at the decision in front of us. Basically, the side effects and outcomes associated with the standard-of-care treatment at the time were not very good. But the side effects noted in temozolomide’s Phase I clinical trials seemed less severe and more manageable. There was also a possible clinical benefit.

So, Susie joined the Phase II clinical trial at MD Anderson, where she received three rounds of temozolomide and carmustine. She finished her radiation treatments in October 1999. I believe the treatment combination kept her residual cancer at bay for more than 14 years.

A brain tumor recurrence: Susie's glioblastoma diagnosis

Unfortunately, Susie’s cancer returned in September 2013. She had a grand mal seizure at home. Scans at the local trauma center showed the cancer had returned.

We were amazed by how fast a tumor could form and cause a seizure. It hadn’t even been detectable at her yearly cancer appointment. We returned to MD Anderson immediately, where Dr. Yung confirmed the relapse and scheduled a second surgery with Dr. Sawaya to remove the tumor. Pathology results showed the recurrence was a much more advanced form of brain cancer: a glioblastoma multiforme.

The new cancer drug Susie took in 1999 was now the standard of care with a different dosage/frequency regimen. A tumor board reviewed Susie’s case to determine how to proceed, and decided the standard of care was the best option.

Susie began receiving temozolomide along with radiation therapy. She stopped a week early because of low platelet counts. But I believe the treatment she received was effective, as her cancer has remained stable for six years.

Why MD Anderson is ‘the right place to be’

Susie has significantly exceeded the overall survival rates for brain cancer — both for her initial diagnosis and her recurrence. I think having the ability to join clinical trials for complicated cases like Susie’s is a key reason to choose MD Anderson, where active research is happening. There aren’t very many people alive with Susie’s cancer history. So, when she had a relapse, there was no question where we would go.

I’m convinced MD Anderson is the right place to be. All of the people we’ve interacted with there have been truly wonderful. We feel really good about contributing to brain cancer research. The new drug Susie received through the clinical trial has become standard across the entire globe, and the care she receives there is second to none.

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