Pancreatic cancer survivor: Why I participated in a clinical trial

During my 50-plus years as a nurse, I’ve witnessed some pretty amazing advances in medicine, and I’m convinced that they are due to research.

That’s why I came straight to MD Anderson when I was diagnosed with stage III pancreatic cancer in May 2017. Over the years, I’d heard stories about advances being made there that amazed me. I also knew the doctors conducted a lot of clinical trials. And I believe in the value of research.

So, when the chance arose for me to participate in a clinical trial myself, I jumped at it. I wanted to give back to society. I now believe that I’m doing as well as I am because of other patients’ participation in research.

As it turned out, I ended up being the very first patient — both at MD Anderson and in the nation — to join one particular pancreatic cancer clinical trial.  At my first checkup after completing my treatments, my doctor said he couldn’t find any cancer cells. I found this amazing.

My unexpected pancreatic cancer diagnosis

My family has absolutely no history of cancer, so being diagnosed with pancreatic cancer was a complete surprise.

I’d started feeling bloated, passing pale stools and experiencing heartburn so severe that it radiated into my shoulders. With a history of acid reflux, I immediately thought it was getting worse. I went to my local doctor in Arkansas several times to get checked out, but two CT scans and a sonogram showed nothing unusual. Then one day I had to go to the emergency room with severe lower abdominal pain. A third CT scan finally revealed pancreatic cancer.

I felt like someone had punched me out. My husband and I both started crying. I thought, “I’m going to die within a year.” That was the worst feeling, because by then, I knew something was really wrong.  It’s not like I’d ignored my symptoms. The cancer had been there, but nobody saw it. I felt sad, angry and disappointed.

My pancreatic cancer treatment

I was referred to a local oncologist. We decided to look for the best cancer hospital and knowing MD Anderson’s history in research, and the team concept, we immediately selected MD Anderson. I made an appointment at MD Anderson in Sugar Land, where I met with Dr. Janet Tu. She said chemotherapy might be able to shrink the tumor enough that surgery could be done.

But while I was receiving chemotherapy, I was evaluated by Dr. Ching-Wei Tzeng, a surgeon. He told me that the tumor wasn’t responding to chemo and he would be unable to perform surgery because the tumor was wrapped around the superior mesenteric artery. 

Radiation was the only option left, so I joined a Phase I/II clinical trial under Dr. Cullen Taniguchi. It tested whether an investigational drug known as GC4419 could reduce the side effects of very high-dose radiation, which I received over five days.

The radiation treatments have worked so far, and I show no evidence of cancer. The only lingering side effects I have are a little bloating if I eat fatty or spicy foods, intermittent side pain, fatigue and possibly not being as mentally sharp as I used to be, though that could just be aging.

My advice: Be persistent

My advice to anyone who’s experiencing symptoms like mine is to be persistent. Don’t say, “Oh, well. My doctor said it’s indigestion and gave me some pills.” If the medication doesn’t work, investigate further. Check out different hospitals or see a specialist, but don’t stay with that same doctor.

And if you’re diagnosed with cancer, you may go through periods when things are going great, and other times when you think, “Well, I better finish my will,” but don’t give up. I am so happy that I went to MD Anderson. I don’t think I’d be alive today otherwise.

I’m still trying to absorb the idea that I might not have cancer anymore. Dr. Taniguchi won’t say that I’m in remission, only that he can’t find any cancer cells. A few could be alive and hiding somewhere in my body, so I still feel a little apprehensive. But right now, at this minute, everything’s good, so I’m trying to get on with my life.

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