Stage 4 Lung Cancer Spread to the Brain:
I spent my life being athletic and even traveling for scuba diving and trekking trips around the world.
In September 2013, I hiked Mt Whitney in one day. That’s 22 miles, up to a 14,500 ft altitude. It’s the highest peak in the contiguous US. Lori Morris on mountain top
Two weeks later I could not walk up a flight of stairs.
I felt like I was not getting oxygen. I immediately went to my primary care physician at UCLA begging for answers. They took an x-ray and said that I had asthma and gave me an inhaler.
SEARCHING FOR ANSWERS
Six months later I complained again, searching for an answer…” asthma”, 6 months later, again – “asthma”. I told them I did not have asthma and the inhalers did not work.
Two years later, I begged for more tests.
They took a 2nd x-ray and did a test for COPD (Chronic Obstructive Pulmonary Disease). They said I had asthma and did not have COPD.
I asked how they knew. They said if my lung function tests were above 76%, I did not have it. They never reviewed my tests with me.
For 4 years, they told me I had asthma, they gave me an inhaler.
Over the years, they made me feel like a hypochondriac. I continued to try to work out but my lung capacity was limited for air. It wasn’t asthma but they would not test me further.
On Jan 20, 2018, I had symptoms of a stroke.
My left side of my body including my face, arm, leg shut down and went numb.
I was rushed to the nearest ER in West Palm Beach, FL.
Diagnosis: Stage 4 Non-Small Cell Lung Cancer
They found a mass on my brain, transported me to a level triage 1 hospital that had a neurosurgeon and the next day the neurosurgeon gave me the news.
I had a 6 cm lung tumor which had metastasized to my brain. I was traveling in Florida at the time and he recommended that I return home immediately to take care of the lung cancer.
When you get news like this, you think, “Where do I begin?”
I knew where to begin.
REMEMBERING DR. NAGOURNEY
Years ago, I met a scientist/oncologist who would save people in the 11th hour.
He had developed a technique that tests your cancer cells in his laboratory against drugs and combinations to see which ones work on your tumor. Before I started any treatment, I wanted proof in the laboratory that it would work.
While awaiting my biopsy and pathology results, my friend encouraged me to get a second opinion on my brain tumor and begged me to go to Cedars-Sinai, a leading medical center here in southern California.
They checked me in and decided they wanted to remove the tumor immediately.
So now I’m having brain surgery. I made sure the neurosurgeon consulted Dr. Nagourney because he needs the tumor specimen as a fresh, sterile living tissue. By getting it this way, he could then test my tumor for the right treatment.
My Lab Test Results
Dr. Nagourney found a few things with my cancer.
I was highly sensitive to a new FDA approved drug called Alectinib.
Because of this finding, he felt confident that I had a mutation called ALK. I was also sensitive to Metformin which is a drug typically used in diabetes.
The interesting find was that I was highly resistant if not 100% resistant to chemo even at the strongest levels. If anyone gave me chemo, it would have been ineffective and even lethal. I had so much cancer, chemo would have killed me.
Getting Additional Opinions
After my meeting with Dr. Nagourney, I met with 6 other oncologists at leading hospitals around the US. After consulting with other oncologists at these cancer research centers which included UCLA, Moffitt, UCSD, Mass General and MD Anderson, I chose Dr. Nagourney because I was confident he knew exactly which drug my cancer would respond to before we tried it.
I particularly remember my experience at the first medical center I went to in southern California.
They did my brain surgery and afterwards, I met one of the top lung oncologists there.
He told me my pet scan was alarming, I had cancer everywhere; I had no known mutations and needed to start on chemo immediately. He ordered it that day.
I was confused because Dr. Nagourney said I had an ALK mutation and also, that chemo would be lethal for me.
I called Dr. Nagourney and let him know what the doctor said. He simply said the doctor there was wrong.
A Potentially Fatal Mistake
Dr. Nagourney asked me if they gave me the pathology report.
Sure enough, the doctor there handed me the pathology report that they did from my brain tumor.
On page 3 it said I had an ALK mutation. This medical center doctor consulted me, a Stage IV cancer patient, without reading the report that he handed to me. He would have treated me with a chemotherapy / immunotherapy combination that would have killed me.
Carelessness at a top hospital with a top doctor.
How many people have to die before we realize the answer has been here all along.
Test for the right drug in the lab first.
We think we go to “the best” hospitals for “the best doctors” to receive “the best” treatments.
Well, I would have been dead by now if I had stuck with the first medical center.
GETTING THE RIGHT TREATMENT
After 90 days on THE RIGHT DRUG, my lung tumor shrunk 87% and all other tumors are gone.
No wonder the death rate in cancer is so high. Patients are getting the wrong drugs. Enough is enough.
Based on the lab analysis done at Nagourney Cancer Institute, Dr. Nagourney also discovered that in addition to Alectinib, my cancer cells should be sensitive to Metformin.
So, we just added Metformin to my treatment. Hopefully, that will help keep the cancer from coming back.
After 5 years, as of 2023, still alive and going strong, thanks to the life-saving Functional Profiling performed by Dr. Nagourney and his team.