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Active on Capitol Hill and with the Kidney Cancer Association, Katherine is a patient advocate who resides in Houston with her husband and daughter.

KATHERINE PHILLION: I’m Katherine Phillion. I’m from Houston, Texas. I’m a kidney cancer, 13-and-a-half-year survivor. And so I’m a — I do patient support and patient advocacy work and I have a day job, I’m a chemical engineer by trade.

If I had waited more than 24 hours I would not be here to tell this story.

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When I was diagnosed, it was three months after my daughter was born and so my mind was in a totally different place. I was successful at my job, I had 20 direct reports, 100 indirect reports, a multimillion dollar budget, I was back at work, I was managing my daycare, the care of my daughter and my job. And then one day I started urinating blood and I realized that something was really wrong. And in 48 hours I had a kidney cancer diagnosis.

And at that time it was total shock and disbelief. I was only 32; this is a disease of a 60-year-old male, heavy smoker, of which I was none. And then it was horror when I realized based on the delivery of the doctor that I had to ask him if it was more important to get my will in order or to look for treatment options. And at that time, what he said was the median survival was about 11 months, so I actually had time to get my will in order, I didn’t have to worry, but that I certainly did have to do some research and figure out what I was going to do next.

And my husband was very much my team member on this effort. And we interviewed three urologists-oncologist teams and I say interview because that’s what it was. And I asked them questions like how many patients they had treated, what their results were and things of that nature and a lot of them hadn’t been interviewed since they had their last job interview, but they were polite and they gave me straightforward answers. And it was funny because one of the individuals said “You just need to go home and enjoy your baby. There’s nothing I can do.” And that wasn’t the right answer, so I went to another, second doctor and his input was “Oh this is nothing, I can take out your tumor with one hand tied behind my back.” And I thought, “Okay, so he’s confident about doing the surgery.” But his oncologist didn’t have a good set of drugs with which to treat me. And so the third doctor that I went to is actually my OBGYN’s jogging partner and I went to see him, he was at M.D. Anderson Cancer center and he talked a good game and I wondered “Hey, is he really that good or is he just really good at marketing?” And what I say 13-and-a-half years later is, “He was that good.”

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In my first year of cancer treatment, I had done the first standard IL-2-based treatment and it failed me. I’ve not failed anything yet with cancer treatments. And then that was after five months then we did the next cancer treatment, which was the next second-line therapy that they thought that somebody with lung mets might benefit from and it failed me. And my oncologist then walked in my office and it’s now eight months elapsed and it’s 11-month median survival and my oncologist came in the room and said, “Katherine, I’m developing a clinical trial and I’m going through the IRB process and trying to get it FDA-approved, but you’re not going to make the trial. And so I’m willing to give it to you on a compassionate basis if you’re willing to try the trial.” And I thought for a second and I said, “Give me 24 hours.”

And so I went home. I think it’s important that people be true to their faith on these things and so I prayed on what I should do and I showed up the next day in the doctor’s office and we started the drugs. In fact, I’m the first human on the three-drug combination. The drugs had all been used many times before to treat cancer, but it was a combination of the three that they were trying to attack a certain pathway.

So, we did the three-drug trial and I had an amazing response – 50% reduction, twice. They put me on a drug, Decadron, to help and I went home and my tumors continued to reduce, okay, and they went another 50%. At that time, if you were a cancer patient and you had mets in your lungs that needed removal, they would consider surgical options to remove the mets if the number was less than six, but I had 12 mets to my lungs. And I could no longer do the drug therapy to reduce the tumors because of the side effects I was having. So I negotiated my way into – with a surgeon, to find a surgeon who would do the surgery for me. And when they did the surgery, it was two different surgeries – on the left side, they removed 25 lung mets and on the right side they removed 49. And so if you add that up, it was 74. And so on the CT scans, you could see 12 that were large, the largest one was a silver dollar, but the surgeon ran his hands over my lung tissue and removed the other small mets that were smaller than CT scans could pick up.

Today, I feel good. I’m on a new treatment – I’m on Torisel. I’ve been on it 12 weeks and the danactive is helping the Torisel just like over the last year it was helping my Sutent- Tarceva regimen. And the importance is that I was on a Sutent-Tarceva regimen for a year and I’m on Torisel now, which are the… Sutent and Tarceva are two of the FDA-approved drugs for kidney cancer. There are three drugs, that I understand from this meeting, that are in the pipeline to be FDA-approved for kidney cancer and there’s maybe even a fourth for this specific type of kidney cancer I have, which is papillary.

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So it’s actually an exciting time where if as a patient these drugs, these new targeted therapies don’t promise a cure, but they do promise a path to survival. So the challenge as a patient, is you have to own your own case, but when you’ve found the right resource, then you have to give your case to them so that they can manage it and so that you can survive. And so it’s an ongoing struggle between owning your own case and being the patient.

[End of recording]