Cancer Clinical Trial’s End Signals Difficult Decisions Ahead

The other shoe dropped. When you’ve been living with ovarian cancer (or any cancer) for 10 years, you live with this possibility, the probability. I knew it would happen at some point, yet I’m still in shock. My oncologist informed me at my monthly appointment this week that the company sponsoring my clinical trial is shutting it down, which means they won’t manufacture any more of my pills. The supply on hand will last through October.

I had a complete response to these drugs. In other words, my cancer hasn’t reoccurred in the three years I’ve been on the study, and the two pesky retroperitoneal (I’ve been doing this so long I can spell that without looking it up!) lymph nodes are only slightly enlarged and stable.

The drug combo either didn’t work for other participants with my biomarker, or the side effects were too severe. They knew that after about a year and shut down “my” arm of the study, leaving me the only participant. They continued to investigate the two drugs separately with other cancers. Until now.

Many thoughts ran through my mind in that small exam room. They spilled out and ran around like monkeys in the zoo. What now? How could they? Why me, Lord? My oncologist reminded me many new drugs are being investigated right now with promising results. I have options, good ones. He suggested the best course of action would be to finish the drug supply and then wait with monitoring to see if the drugs had done their job so well that my cancer has essentially been cured. He has a good example of another patient in similar circumstances who is still NED (no evidence of disease) two years after her study was discontinued.

How amazing, right?After 10 years in continuous treatment, I could be free of this heavy burden. It’s a wonderful thought. It’s a scary thought. I feel as if I’m about to step out on a high wire with no net. Of course, the net is there. It’s simply hard to see. My oncologist and the entire team have my back. I won’t be cast to the wolves. I could be cured. Or not. We don’t know.

I really need to make this decision to jump out of the plane without a parachute now, rather than later. Here’s why. The side effects that likely contributed to the end of this research study are difficult and getting worse. Dealing with worsening chronic diarrhea for three years is tough physically and mentally. My body is suffering the effects of a no-fiber, bland, high-carb diet. I’ve gained 25 pounds from eating so much bread, peanut butter, bagels, cheese, crackers, potatoes and other foods that won’t cause acid reflux and stomach woes. My A1c is rising, nudging me toward pre-diabetes. My ankles and feet are so swollen I’ve gone up a shoe size. Chronic fatigue and susceptibility to infection are also challenges. I have other issues too embarrassing to discuss here.

With all those facts running on the hamster wheel in my brain, I blurt out this question: Why suffer another eight months? Why not stop it now and give my body a rest? The problem is there’s no way to know if I’ll recur three months later or a year later or never. What if I stop now, and the cancer comes back in October?I’ll have given my body eight months of rest it badly needs, but I’ll be thrown right back into the purgatory of trying to find a clinical trial that will stop the cancer in its track. Will I get another minor miracle with a trial drug that stops the progression for three years, or will this be the time when nothing stops the cancer on its deadly mission?

My oncologist and my husband both said the same thing. This is a decision I have to make. I’m still teetering on the edge, not sure which way to go. I’m praying on it. If ever I could use a sign, God, this would be it.I’ve written a list of pros and cons. It hasn’t helped.

The reason I share all of this is because I hope my clinical trial experiences will be valuable to other cancer patients. No matter how hard this is, I still recommend clinical trials. Not as a last resort, but as an important option when weighing treatment choices. I don’t know what choice I’ll make, but I’m thankful to still be here to have that choice.

One of the reasons I’m still here today is because of this clinical trial. I’ve heard people claim that researchers and doctors don’t want to cure cancer because they “make so much money” off the disease. From my personal perspective supported by my experiences, I say hogwash. When my oncologist told me this study had ended, my first thought was of the expense, the time, the resources, and the staffing that went into producing those two drugs. Just getting them to the first-in-human phase 1 trial would’ve been an enormous expense incurred over several years. Jumping through the FDA hoops, in place for patient safety, takes years. I think of what the study sponsors spent just for me, including the drug itself, MUGA scans, specialized ophthalmology exams and CT scans every two months at first, and then every three months, for three years. Multiply that with every patient in every arm of the study with the other kinds of cancer they hoped to treat and the cost is well into the millions.

I do believe drug companies are in the business of making money. Aren’t all businesses? But there are easier ways to get rich. Many of the individual researchers have altruistic reasons. It’s possible to have more than one reason. Just like I’m in these trials for a selfish reason — to save my life, but I also want to contribute to finding a cure to help other women with this disease. I have a daughter, a granddaughter, a daughter-in-law, sisters, sisters-in-laws, nieces and friends, who are at risk for ovarian cancer. Fifty percent of the population is at risk. There’s no diagnostic tool available. It’s likely to be diagnosed in the late stages. It has a high mortality rate. So, bring on the clinical trials. If they make money, good for them, as long as the goal is also to effectively treat the disease — maybe even cure it.

In the meantime, I’m preparing to step out on the highwire again. Wish me luck. Prayers appreciated.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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