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Lung CancerPatient StoriesPatient Advocacy

John Doll’s Lung Cancer Journey: From Patent Commissioner to Patient Advocacy

A chest x-ray and a CT scan revealed a diagnosis of stage IV (advanced) non–small-cell lung cancer after John Doll was experiencing shortness of breath and a lingering cold.
December 2020 Vol 6 No 6
Chase Doyle
John Doll.

Shortness of breath and a lingering cold in the winter of 2019 led to a diagnostic chest x-ray and a CT scan for John Doll of Morrisville, North Carolina, who retired after many years as Commissioner of the United States Patent and Trademark Office, a position in which he was involved in reviewing new drugs submitted for approval.

The imaging studies revealed a mass on his lungs, so a biopsy was ordered, which confirmed the surprising diagnosis of stage IV (advanced) non–small-cell lung cancer. The doctors soon found out that the cancer had spread to his blood, which meant that it was metastatic lung cancer.

Simple Twist of Fate

As the Commissioner of the United States Patent and Trademark Office, John was involved in the review of thousands of applications submitted for the approval of new drugs, including many cancer drugs.

Not long after his retirement, the then-new immunotherapy Keytruda (pembrolizumab) received its trademark out of the unit he had once supervised, as part of the drug’s approval process. And now, this very same drug was being used to treat advanced lung cancer.

His treatment plan started with Keytruda and included 3 rounds of stereotactic body radiation, which kept his cancer at bay for nearly 1 year. Eventually, however, as is usually the case with metastatic lung cancer, additional masses developed on his lungs, hip, and ribcage.

Immunotherapy helped to control the cancer, but one of the side effects was damage to his pituitary gland, which shut down his body’s natural production of cortisol. Cortisol is a steroid hormone that regulates many body functions, including metabolism and the immune response. This side effect left John, an active 72-year-old man, facing tremendous fatigue and at risk for other conditions.

Brief Restoration

To address this problem and jumpstart his pituitary gland function, his doctor prescribed the steroid prednisone, which quickly worked wonders, restoring this important hormone in his body.

“I felt like a teenager again. I was going to the store at 9 pm to pick up supplies for countless home improvement projects. Prednisone was phenomenal,” John said.

With his energy restored, John and his doctors decided to switch his treatment to targeted drugs that are designed to treat lung cancer associated with genetic mutations. He was first prescribed Xalkori (crizotinib), a targeted therapy used for lung cancer associated with the ALK or ROS1 mutations (which are not the mutation John has), which worked for roughly 6 months, until his cancer started to spread again.

In May 2020, a new targeted therapy, Tabrecta (capmatinib), was approved by the FDA specifically for the treatment of people with lung cancer and the genetic mutation John had, called MET exon 14 skipping. So, his doctors prescribed this drug. However, after only 2 months, Tabrecta was found to be ineffective for him.

“The cancer was not only spreading again, but sections of the disease were actually lighting up brighter on the PET scan,” John said.

Most recently, John started treatment again with the immunotherapy Keytruda, but this time it was prescribed in combination with 2 chemotherapy drugs, carboplatin and pemetrexed. Evidence has shown that Keytruda has a synergistic effect with chemotherapy, which improves the outcomes for some patients.

The Cost of Drug Costs

But now cost became an issue. Immunotherapy, and many cancer drugs are quite expensive. John’s insurance company refused to foot the $17,000 bill for another round of Keytruda, given his previous results with this drug. The good news is, that because his insurance did not cover the cost of Keytruda, he was eligible to receive the drug for free through the Patient Assistance Program offered by Merck, the drug manufacturer of Keytruda.

Many drug companies today offer their (often very expensive) cancer drugs for free for patients who have no insurance or who have insurance that does not cover the cost of certain cancer drugs. (For more information on this, check the Patient Guide to Cancer Support Services published by CONQUER magazine at the end of each year, or visit www.conquer-magazine.com/pssguide2021.)

Beat Up by Chemo

Although John’s cancer has remained stable with this new combination of immunotherapy plus chemotherapy, the initial CT scans did not show the big improvement that he and his doctors were hoping for. On his fourth round of chemotherapy, he is also starting to feel the chemo’s cumulative side effects.

“Carboplatin has a cumulative effect, where it builds up in your body, and then all of a sudden, it’ll just hit you,” said John. “I think that’s what’s happening with me now. I’ve been pretty beat up from the chemo.”

Still, John remains undeterred. During the chemo infusions, he spends his time reading “The MET Crusaders” (https://metcrusaders.org), which tracks the latest developments for patients with lung cancer who, like him, have the MET genetic mutation. This might have helped him to find his next treatment regimen, which involved a combination of immunotherapy and a new targeted therapy that is being investigated in a phase 2 clinical trial he hopes to join.

Patient Advocacy

While John awaits to see if he could enroll in the clinical trial, his background in biotechnology and drug development continues to serve him well.

He now works with organizations like the Lung Cancer Research Foundation to help patients like him prepare for the complexity of cancer care, and he is mindful of his unique perspective on these life-saving therapies.

“Some of the drugs that I worked on as Director of Biotechnology are the actual drugs that have helped extend my life, and hopefully will continue to help more people,” said John. He added that before the recent advances in immunotherapies and targeted therapies, most patients with lung cancer lived only 1 or 2 years after their diagnosis.

“Now, it’s not uncommon to live for 5 years or more, and in that time, an even better therapy may come along that gives you a better chance to beat this disease,” John suggested.

Despite the recent influx of novel drugs, however, John emphasized that lung cancer research remains significantly underfunded.

“Lung cancer kills more people than prostate, breast, and colon cancer combined, but it receives just a fraction of the funding,” he explained.

Gratitude

Nevertheless, John continues to remain optimistic about his future and is grateful for the care he has received.

“From the beginning, my oncologist was extremely concerned about me, and was always open to answering questions about new therapies that I had found on the Internet, or possible new treatments that he knew of,” John said. “When he ran into a question that he couldn’t answer, he immediately recommended that we look for a second opinion, and that we go to a lung cancer specialist, not just a general oncologist, to advise me on the best path forward.”

He added, “I wish everyone could receive the treatment I have. All my doctors, oncologists, nurses, and radiation technicians have always been extremely empathic. They constantly made me feel like I was their number one priority. That was the most important part—I felt valued, like they were doing everything they could to make my treatment the best it could be.”

When John is not researching cutting-edge therapies or volunteering with advocacy groups, he can be found working outdoors at his lake home in North Carolina, or spending time with his 4 grandchildren, including a set of 6-year-old twin girls he calls his “twin tornadoes.”

He recently shared his story at the 2020 International Association for the Study of Lung Cancer.

Patient Resources

Cancer Research Institute
www.cancerresearch.org/blog/november-2020/lung-cancer-immunotherapy-leena-gandhi
Lung Cancer Research Foundation
www.lungcancerresearchfoundation.org
MET Crusaders
https://metcrusaders.org
National Cancer Institute
www.cancer.gov/about-cancer/treatment/drugs/lung
Patient Guide to Cancer Support Services
www.conquer-magazine.com/pssguide2021

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Last modified: January 14, 2021

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