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Shoes and Clinical Trials – Don’t Save Them for Fancy Occasions

Posted by on October 31, 2013 in Medical Procedures and Other Drugs, RCC News & Research - 7 Comments

I have a confession to make. I have a slight obsession with shoes. I wasn’t always a shoe collector. In fact, when I first started working, I had one pair of black pumps and one pair of brown pumps. They might have been the same shoe in different colors. My friend Marcie was the first person to encourage me to break out of sensible shoes.

“Dena, when you wear the same pair of shoes every day, they wear down faster. If you had four pairs of black pumps, think of how long they would last? You need to branch out, try some canvas wedges for summer – think suede leather boots for winter… you’ll be saving money.”

My late husband Chris marveled at how enthusiastically I embraced Marcie’s advice. I now have a closet wall dedicated to shoes. Shelves lined with practical and impractical, peeptoe and slingbacks.

When Chris was diagnosed with cancer, I developed a new obsession: clinical trials. My initial foray into trials started much the same way that I looked for shoes. A simple search for a kidney cancer trial, preferably nothing too risky – phase 3 for sure. A basic black pump with a solid heel. Absolutely no bows.

I quickly learned though that my efforts at being sensible were limiting our access to treatment. Searching only for “kidney cancer” resulted in fewer trial options. Many of them weren’t good fits for Chris – previous treatments or even lack of previous treatments made him ineligible. Some of the trials were for drugs that we already had access to.

I found that some of the most exciting trials were phase 1 – trials that were open to many cancer types, not just kidney cancer. By searching for “solid tumor” rather than kidney cancer, I found promising new therapies that might give us a shot at a really lasting and durable response. By branching out of what I thought were safe phase 3 trials, we were opening up access to cutting-edge treatments that doctors were buzzing about.

When we first met with Dr. Hammers at Johns Hopkins to discuss a phase 1 trial for a new immunotherapy drug, he looked at Chris and asked him how he had found one of the most exciting new drugs for kidney cancer. Chris and I were quick to point out that we’d been following the drug for some time – we’d read about it online, matched it with Chris’s profile, we felt like it would be a perfect fit. We were as excited as the researchers were. After all, this drug had the possibility to save his life. Even though the trial drug didn’t work for Chris, we were grateful that we had the opportunity to try it.

Yesterday, I went back up to Johns Hopkins for a meeting with cancer survivors, advocates, doctors, nurses and researchers. The topic? How to help patients embrace and enroll in clinical trials.

Knowing how I felt when Chris was first diagnosed, it shouldn’t surprise me when folks are still apprehensive about clinical trials. Speaking to a fellow caregiver the other day, he mentioned that his wife was terrified of entering a trial. She viewed it as a last resort – something you would only do after you’d exhausted all other options.

The reality is though that when a clinical trial should or shouldn’t be used is based entirely on the individual and the best course of action for how to treat their disease. Some clinical trials are designed for patients who are treatment naïve – they may offer something that no FDA-approved drug could provide. Some trials are best used after another more conventional treatment has failed. But patients and doctors should be following trials from diagnosis, so opportunities aren’t missed.

Just because you don’t have an outfit to match the shoes doesn’t mean they aren’t great shoes. They might just be what you’re looking for down the road.

  • minnie

    Dear Dena, after 6 years of a happy and pleasant relationship with the ever elusive NED (no evidence of disease) it seems that our relationship has hit a slight hitch. I will only know at the end of November if it is just is hick-up or if it is a break up. But until then, thank you for giving me new research tools. Throughout your battle with RCC you have truly embodied patient empowerment and you still continue to do so. Thank you so very much.
    Much love

  • Em

    Dena, it’s emily. As you know my father passed alway.
    Please email me on emily.maisano@gmail.com
    I am overwhelmed by grief and have no one to talk to.

    Thank you in advance

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  • Tina

    Hi Dena, this is Tina from China. Each time I feel sad, I turn to the blog to gain courage. I miss Chris a lot. Recently my Dad’s health condition deteriorates and the doctors really do nothing but to scare my mother. Whatever we recommend, they just say it is a waste of time to a cancer patient, and suggest us to let it go. How can they act like this.. And more sadly, we have very limited chance to participate clinical trials that seem so promising. Recently BMS starts some clinical trials in Japan, I felt that might be a closer place to go to and I emailed several investigators in Japan to ask whether Chinese patients can participate, no one ever replied a word, ever.There are so many things I cannot understand in the world but learn to accept, but one thing I can never understand is, why people do not have the equal right to life. The drug seems so close, yet is so far away.

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  • Sara Furlong

    Solid tumors. That’s a great tip. Thanks for that!! ;)

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