Stage IV NSCLC survivor - Pat Merwin

Hi, I'm Pat and I'm a cancer survivor.

If you or a loved one has just been diagnosed with cancer, you may be scared and confused. I know I was. You are probably feeling overwhelmed by so many decisions suddenly facing you. I've been there too.

I've also successfully lived with cancer long enough to know that patients who actively participate in their own treatment decisions do better. Knowledge is power, and being able to ask questions and make informed decisions can save your life. If you have come to this website, you've already taken that first step toward patient empowerment. Congratulations!

As a cancer survivor, I'd like to help you navigate your own journey by sharing some of the things I've learned about cancer and how to survive it. The most important thing is this . . . do all you can to find a treatment plan that is right for YOU. When it comes to chemotherapy, one size does NOT fit all.

I Have What?

My journey began on September 15, 2008. That afternoon, while leaving the gym, I had a sudden seizure. I was taken by ambulance to my local hospital in Long Beach, California. A CT scan confirmed that I had two small brain tumors, one of which had caused the seizure. After numerous other tests, I was informed that I had Stage IV NSCLC (non-small cell lung cancer) with metastases to my brain. 

Get Our Lung Cancer Guide I was in shock. It was surreal. I was a healthy, 52-year-old woman with no symptoms. I was surrounded by doctors I didn’t know who were telling me things I could barely comprehend.

I was told that my cancer was inoperable.

I was advised to immediately start chemotherapy and radiation. I was told to go home and get my affairs in order. I was asked if I wanted to talk to the hospital chaplain. I was certainly not given the impression that I could survive, or that I had options.  

What Should I Do?

The only thing I knew for certain was that I was an amateur when it came to cancer and I had no idea what I was supposed to do. Should I just do as the doctors said and start chemotherapy immediately? Would I get sick? Could I survive? Did I have time to wait and do some research? Should I get a second opinion? Were there alternatives?  Even if there were, how could I know what was best?

Fortunately, I have a close friend who was, and still is, a pharmacist at this hospital. She insisted I consult with Dr. Robert Nagourney before deciding anything. She told me that he was a highly regarded oncologist and a pioneer in the development and use of “functional profiling,”.

Heeding my friend's advice, a few days later I was seated in the waiting room at Rational Therapeutics. A sign on the wall read “Hope Practiced Here.” That was comforting, because I certainly didn't leave the hospital feeling very hopeful.

Meeting Dr. Nagourney

I sat quietly as Dr. Nagourney reviewed my medical records. He gave me a physical exam, then asked if I felt sick. I said, “No, I don't feel sick at all; I feel healthy.”

What Dr. Nagourney said next really surprised me. He replied, “That's because you're not sick. You have cancer, and my job is to keep you from getting sick.” He explained that, even though my cancer was very serious (having already metastasized, it was technically incurable), he was certain there were treatments that would help.

He explained that most oncologists follow standard protocols, treating patients with the same chemotherapy drugs based solely on their type of cancer. Since Dr. Nagourney believes that no two patients are alike, and neither are their tumors, he would do something different.

He would test a piece of my tumor first to see which of the many potential chemotherapies How We Test Your Cancer Infographic would be the most effective at killing my cancer cells. Whichever drug(s) proved most effective in the lab would be the treatment he would prescribe – personalized just for me.

I didn't realize there were so many kinds of chemotherapies, and that despite clinical trial evidence, some drugs might work while others would not. Testing them first in the lab seemed so simple and obvious – if it worked!

About Clinical Trials and Standardized Chemotherapy

Did you know that, typically, oncologists prescribe chemotherapy drugs based on standard protocols, or guidelines? These guidelines are developed from years of clinical trial research. Clinical trials test large groups of patients with the same types of cancer to see which drugs produce the best results. The drugs that help the greatest number of patients in a trial setting eventually become the drugs that doctors usually prescribe when treating their own patients.

The problem with this ”one size fits all“ approach is, that with many types of cancer, only about 30 – 40 percent of patients will improve with their first line of treatment.

Why such a small success rate? Because a drug can be considered statistically successful simply by being better than the other drugs tested – the lesser of the evils.

So what does that mean for the 60 – 70 percent of patients who fail to get better?  It means their doctor must choose a second, third or even fourth line of drugs in hopes of finding something the patient will respond to. With hundreds of potential drugs to choose from, it would be impossible to try every drug.

With such small success rates, standardized chemotherapy treatments often do more harm than good. Patients can get sick from the toxic drugs and precious time is wasted. And potentially effective drugs may be ignored. Since I was fighting for my life, I wanted better odds than that!

What the Heck is a "Functional Profile" Anyway?

The alternative to standard protocols is individualized therapy. Dr. Nagourney believes that every patient is unique, and so is their cancer. In order to determine which chemotherapy has the best chance of working, he has developed a test (EVA-PCD functional profile) that reveals how a person's actual cancer cells respond in the lab when different drugs are applied.

The reason it is called a “Functional Profile Assay” is that it assesses how a drug functions (performs) in real time on your live cancer cells. The result is a profile of how effective the various drugs were in killing your cancer. The test results can provide your oncologist with a better roadmap in determining what therapy will be best for you.

Studies have shown that patients are twice as likely to respond to treatment when their therapy is based on drug sensitivity testing rather than standard protocols. I knew I only had one chance to get chemotherapy right the first time, so I chose the EVA-PCD functional profile test to give me the best odds.

How is It Done

As I mentioned, rather than going down the path of least resistance (standardized chemotherapy), I choose Dr. Nagourney's plan and underwent a small, surgical biopsy in order to obtain a large enough sample of my cancerous tissue for testing.

Obtaining enough cancerous tissue or fluids can be easy or difficult, depending on the type of cancer, the location and amount of tumor cells. My surgeon did have to cut an incision in my side in order to obtain a piece of my lung tumor, but I was out of the hospital in two days with no complications. Often biopsies can be done on an outpatient basis, or be collected from initial cancer surgery.

Because my hospital was located nearby, my tissue sample was taken immediately to Rational Therapeutics. But tissue samples can be sent to them via overnight express from all over the world, so location is not a problem. The most important thing is that enough live cancer cells are present for testing. Needle biopsies do NOT provide enough tumor cells to do a test.

Once the sample is received, pieces of your still-living tissue are subjected to various combinations of drugs. Your cancer will be considered sensitive to the drugs that kill the most cancer cells, and resistant to the drugs that are least effective. Often, there will be synergy in which combinations of drugs do better than single drugs alone.

My Personalized Treatment Plan

Within one week of my surgery the results were in.

Sitting again in Dr. Nagourney's office, I was more than a little anxious waiting for the news. The test results couldn’t have been better. One of the drug combinations that showed a dramatic reduction in my cancer cells was Tarceva and Avastin.

In 2008, Tarceva was a fairly new oral chemotherapy that was only used as a second line treatment, after conventional treatment had failed. And it was rarely, if ever, used in combination with Avastin. But Dr. Nagourney was so certain that this was the “cocktail“ that would send my Stage IV NSCLC lung cancer into remission, that he prescribed it anyways.

He was 100 percent right. And I am so grateful to him for treating me like an individual and not a statistic. My unique Tarceva/Avastin combination is still working and my cancer remains in control. Several years after I started treatment, Tarceva did become a standard protocol for people with a certain type of lung cancer. 

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