Bladder cancer survivor: Why I fly 3,200 miles for an immunotherapy clinical trial

Looking back, I wish I’d asked more questions when I was first diagnosed with bladder cancer in July 2010.

I have plasmacytoid urothelial carcinoma, a rare and very aggressive type of bladder cancer that spreads through the blood. But because my local doctors didn’t know that at the time, it led to not just one, but four separate recurrences — despite the tumor being entirely within my bladder and having my bladder surgically removed as a first line of treatment.

Eventually, the cancer spread to my large intestine (Dec. 2011), both lungs (Oct. 2012 and April 2013), and underneath my right kidney (Oct. 2013). As a result, I also had part of my colon surgically removed, so I’ll have a second bag that collects stool outside my body for the rest of my life.

My wife and I decided to get an opinion from a larger cancer hospital, so I went to MD Anderson the first time the cancer returned. I received chemotherapy twice and gene therapy twice, and showed some improvement. Since joining an immunotherapy clinical trial under Dr. Padmanee Sharma in June 2014, my fifth tumor dissolved and I have shown no evidence of disease.

Why I joined an immunotherapy clinical trial

Cancer is a nasty disease. But MD Anderson researchers have made huge strides against it. In fact, research is what led to the development of nivolumab, the immunotherapy drug I’m on right now. It wasn’t available when I was first diagnosed, but a patient who’s diagnosed today might be able to avoid surgery entirely because of it. I quickly chose clinical trials for the opportunity to be successful against my cancer, as other approaches were showing diminishing success.

The way I see it, staying on the clinical trial is the least I can do to say “thank you” for the privilege of still being alive. I gain a higher level of care through the clinical trial, and my continued participation might help future patients. I want to pay back my good fortune.

The clinical trial protocol provides that as long as I’m benefiting from the drug, I can continue taking it. Early on, I had such terrible itchy hives that it felt like I was sleeping on an ant bed. But those were resolved with ointment, light treatments and an over-the-counter allergy pill. Since it is an entirely new treatment for my type of cancer, no one knows if the cancer is gone or just being controlled by the immunotherapy. A very good reason to continue.

Why I keep flying to Houston from Alaska

Since I started this clinical trial four years ago, nivolumab has been approved as a standard treatment for bladder cancer. So, today, I can get the exact type of immunotherapy I’m receiving at MD Anderson near my home in Anchorage, Alaska.

But I keep flying the 3,200 miles to Houston every two weeks because of the quality of care I get from Dr. Arlene Siefker-Radtke at MD Anderson. And as long as I’m healthy enough to travel, I’m going to keep doing that. Because she and her staff treat you as more than a patient. They’re like family.

One nurse stays late every time I come in for a check-up just to give me an EKG. She could go home and let somebody else handle it, but she stays late because she cares and wants to see how I’m doing. And that’s really special.

Never be afraid to take on something new

When I was first diagnosed, my local doctors had no experience with plasmacytoid bladder cancer. It took a research hospital like MD Anderson to find my cancer marker (CA 125), because it’s normally used only to detect ovarian cancer.

That’s why I tell people to do their own research and ask a lot of questions. Be your own best advocate and always get a second opinion. And when it comes to clinical trials, never be afraid to take on something new.

Is it a little scary to participate in a clinical trial? Of course. But I looked at it as an opportunity, because I wanted to live. So get in a place where those opportunities are available. I was the very first patient from MD Anderson to join my particular clinical trial. And today, I know I’ve won the lottery.

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