{"id":11742,"date":"2017-08-30T15:14:53","date_gmt":"2017-08-30T21:14:53","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=11742"},"modified":"2022-01-26T12:55:43","modified_gmt":"2022-01-26T19:55:43","slug":"98-brain-tumors-lessons-in-fortitude-and-forgiveness","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/98-brain-tumors-lessons-in-fortitude-and-forgiveness\/","title":{"rendered":"98 brain tumors: lessons in fortitude and forgiveness"},"content":{"rendered":"
<\/div>

The black mole on the top of the young dad\u2019s head did not look particularly ominous.<\/p>\n

At the time, Leland Fay didn\u2019t give it much thought. He was busy, coaching his sons, then ages 8 and 5, in hockey, working as an aerospace engineer at Lockheed Martin and enjoying the Colorado mountains during frequent hikes with his wife, Sarah, and the boys.<\/p>\n

Fay has fair Irish skin and knew he was at greater risk for skin cancer, so he made time for regular checkups.<\/p>\n

\"Leland
Leland Fay hiking with his two sons. (Photo courtesy of Leland Fay.)<\/figcaption><\/figure>\n

Unfortunately, a Colorado Springs dermatologist dismissed the mole as no big deal and froze it off.<\/p>\n

Months later, Fay would learn through a biopsy that the mole was a sign of a very deadly attacker, melanoma.<\/p>\n

Detected early, melanoma can be treated. Unchecked, it can grow fast.<\/p>\n

Fay had the misfortune of coping with melanoma that had already spread, first to his lymph nodes and organs, then in an ominous show of force, emerging as 98 tumors in his brain. Once the melanoma had spread, Fay faced terrible odds. He learned he had as few as six weeks to live.<\/p>\n

But Fay refused to succumb to his lousy prospects and jumped into research mode, first finding a clinical trial for immunotherapy in Los Angeles, then receiving critical help from a neurosurgeon at UCHealth\u2019s University of Colorado Hospital<\/a>. Dr. Robert Breeze<\/a> used highly targeted gamma radiation to disarm the 98 tumors. One brain tumor also required traditional surgery.<\/p>\n

Now, five years after his melanoma diagnosis, Fay savors the routine of normal life. A writer in addition to being a software engineer, he chronicles his journey on his blog, 98 Brain Tumors. Along with work and everyday life in their hometown of Monument, he gets regular treatments and scans, but has joined a very unique club. Only about 5 percent of patients with metastatic melanoma are alive five years after diagnosis.<\/p>\n

Life expectancy going up astronomically<\/strong><\/p>\n

Fay\u2019s survival may offer a beacon of hope for other patients.<\/p>\n

\u201cLife expectancy is going up astronomically because of new targeted therapies,\u201d Breeze said.<\/p>\n

\"Leland
Leland Fay, left, with Dr. Robert Breeze, who used highly targeted radiation to treat 98 tumors in Fay’s brain.<\/figcaption><\/figure>\n

\u201cIn the old days, if a patient showed up with 20 or 30 or 40 tumors, I would have said there was nothing I could do and sent them to hospice. Now, I can treat 20 tumors in a day,\u201d Breeze said.<\/p>\n

Because of Colorado\u2019s sunny climate, rates of melanoma are higher here than in many other states. Like other academic medical centers in sunny places from Australia to Los Angeles, the University of Colorado Hospital has become one of the world\u2019s top centers for skin cancer treatment and research. Breeze and his colleagues pioneer the newest treatments and for years, have advocated for very aggressive treatment of brain tumors. They also keep close track of patients with frequent scans \u00ad \u2013 as often as every two months \u2013 so they can immediately pounce on any new tumors and neutralize them.<\/p>\n

Along with new, promising immunotherapy drugs, aggressive monitoring and gamma radiation treatments are paying off.<\/p>\n

\u201cI think we\u2019re going to see more people like Leland who present with metastatic cancer and become long-term survivors,\u201d Breeze said.<\/p>\n

Fay is grateful to be part of an exclusive club of unlikely survivors. But after living through excruciating pain and heart-stopping fears, he is a pro at quietly carrying on. It\u2019s as if he\u2019s done battle with the meddlesome gods of ancient Greek myths. If he sticks his head up, his foes just might notice and wreak their vengeance again.<\/p>\n

Instead of declaring victory, Fay embraces lessons of fortitude and forgiveness. He considers himself incredibly lucky to go to work, tuck his boys in each night and bore his wife with his incessant talk about hockey.<\/p>\n

Forgiveness<\/strong><\/p>\n

Fay hadn\u2019t given his mole much thought until it resurfaced a few months after the dermatologist froze it off. This time, it was bigger and nastier. He decided to go see his primary care doctor.<\/p>\n

\u201cI had a weird feeling about it. I didn\u2019t know what a lymph node was, but one of the lymph nodes in the back of my head had started to swell,\u201d Fay recalled.<\/p>\n

His doctor seemed spooked and sent him back to the dermatologist.<\/p>\n

\"Leland
Leland Fay loves hockey and helped coach both of his sons. (Photo courtesy of Leland Fay.)<\/figcaption><\/figure>\n

This time, his dermatologist\u2019s partner did a biopsy. A few days later, when the results came in, Fay\u2019s original dermatologist called crying. The results confirmed the worst. In April of 2012, at just 41, Fay was facing melanoma that appeared to be spreading fast.<\/p>\n

Before he could grapple with treatment options, Fay first had to make a profound decision.<\/p>\n

\u201cIt was clear to me that I had to forgive them right away,\u201d he said of the dermatologists who had initially missed the melanoma diagnosis. \u201cI just imagined myself dying a miserable death and being very angry. And I was not going to carry that anger with me.\u201d<\/p>\n

He also believes that anger can weaken the immune system, so he made the decision to let go of any blame.<\/p>\n

Fay then had to get busy with treatments. Almost immediately, he had to have three surgeries. The first removed lymph nodes from his neck.<\/p>\n

Then he had to go back for what\u2019s called a full right neck dissection.<\/p>\n

\u201cIt\u2019s a precautionary thing. They go in and remove all of the lymph nodes in your neck. It looks like your throat has been slit. They start from the back of your skull and cut around to the front and use these big metal stitches. It was pretty nasty.\u201d<\/p>\n

Then, he had to have surgery on his scalp to remove lesions that had spread.<\/p>\n

Enduring Frankenstein surgeries should have been enough of an indignity, but in August, Fay got more bad news.<\/p>\n

\u201cThey found that the cancer had spread to my lungs, liver and stomach. That\u2019s when I was stage 4.\u201d<\/p>\n

Fay visited Dr. Rene Gonzalez at UCHealth and saw specialists in Pittsburgh and Los Angeles.<\/p>\n

Back in 2012, immunotherapy research was very new and Fay was thrilled to be accepted into a clinical trial in Los Angeles. He had to pay his own way to travel to California every Thursday for what felt like torture.<\/p>\n

\u201cThey were testing the toxicity of combination therapies. It was brutal. I went a couple of weeks without sleeping. I had itchy, horrible hives and fevers and had massive burns,\u201d Fay said.<\/p>\n

Despite the suffering, he never considered quitting. And scans seemed to show that the cancer tumors throughout his body were decreasing in size.<\/p>\n

But after four months, a new scan showed what appeared to be 43 tumors in Fay\u2019s brain. He remembers his doctor in Los Angeles holding his hand and tearfully delivering the bad news.<\/p>\n

\u201cI flunked out of the trial. They weren\u2019t sure if the tumors in the brain had been there previously. It was unclear if the immunotherapy had had any impacts. But I was out. It was mind boggling.\u201d<\/p>\n

A shot at survival<\/strong><\/p>\n

Fay returned to Colorado and made two key decisions. First, he decided to embark on an ultra-healthy diet. He stopped eating meat and sugar, a practice he has continued for years. His blood work improved. And he consulted again with Dr. Gonzalez.<\/p>\n

Instead of closing the doors on treatment options, Gonzalez told Fay he could see his colleague, Dr. Breeze, who was having positive results for brain tumors with gamma radiation treatments, also known as stereotactic radiosurgery or Gamma Knife.<\/p>\n

\"This
Sarah Fay has been a rock of support for her husband as he has dealt with cancer. (Photo courtesy of Leland Fay.)<\/figcaption><\/figure>\n

Offered a tentacle of hope, Fay had to fight for the treatments. His insurance company at first refused to pay for the radiosurgery. But a screening physician saw that he was doing relatively well.<\/p>\n

\u201cEven though I had all these brain tumors, I could speak and walk and talk. I was coaching my boys\u2019 hockey. And I was going to work every day.\u201d<\/p>\n

The insurance company gave Fay their approval and a shot at survival.<\/p>\n

Dr. Breeze began systematically treating about 10 of Fay\u2019s tumors each month. As with the immunotherapy trial in Los Angeles, the radiation treatments sometimes felt like torture.<\/p>\n

\u201cThey use a screwdriver to drill a cage into your skull. Then you go into a tube. I was like a human toner cartridge,\u201d Fay said. \u201cIt\u2019s not a knife. They take beams of radiation and aim them at a specific spot in your brain.\u201d<\/p>\n

Each treatment would take about four hours. Sometimes, with sedation, Fay could sleep through them. The cage holds the patient\u2019s head completely still so Breeze can precisely aim the gamma rays at each tumor.<\/p>\n

In the summer of 2013, Fay thought he was nearly done when a new scan showed additional brain tumors, bringing the total to a stunning 98. The others were not growing, so Fay\u2019s doctors theorized they had been there all along. They were just hard to see on the scans.<\/p>\n

Fay decided he wanted them all zapped at once.<\/p>\n

\u201cYou\u2019re dealing with cancer. The longer it\u2019s in there untreated, the greater the chance that it\u2019s going to spread,\u201d he said.<\/p>\n

So he told Dr. Breeze his plan.<\/p>\n

\u201cI want you to get all 52 in two months. I don\u2019t want to string this out.\u201d<\/p>\n

So that\u2019s what they did.<\/p>\n

Fortitude<\/strong><\/p>\n

For some patients, about 25 percent of the brain tumors will need additional treatment beyond the gamma radiation. Fay was lucky. Only one of his 98 needed to be cut out surgically.<\/p>\n

He also got lucky that as the brain treatments kept the melanoma at bay, science was advancing. In 2014, some new immunotherapy drugs received FDA approval and Fay was able to once again receive treatments that would encourage his immune system to fight the cancer itself. He\u2019s on the same drug that former President Jimmy Carter received for his melanoma. It\u2019s called pembrolizumab or Keytruda.<\/p>\n

\"Leland
Leland Fay has kept active while fighting cancer. (Photo courtesy of Leland Fay.)<\/figcaption><\/figure>\n

Every three weeks, Fay goes in for an infusion that takes about 30 minutes. And he continues to get scans to monitor his progress. He\u2019s used to the emotional roller coaster ride. About a week before his scans, he finds that the anxiety builds. Each scan has continued to show that his cancer has not progressed and Fay can let his guard down temporarily.<\/p>\n

His boys are now 10 and 12. When Fay first received his diagnosis, he felt he had to be pretty honest with the kids.<\/p>\n

\u201cI told them, \u2018I have cancer and there\u2019s a chance I could die and we\u2019re all going to do the best we can to fight this. We believe in God and we have faith. Whatever\u2019s supposed to happen is going to happen.\u2019<\/p>\n

\u201cWe all cried a lot.\u201d<\/p>\n

Throughout the ordeal, he said his wife has been a saint. He doesn\u2019t claim that status himself. Sometimes the anger boils up and he hits a punching bag to get it out.<\/p>\n

Doctors marvel at Fay\u2019s resiliency.<\/p>\n

\u201cHe\u2019s doing great. I hope he lives a very long life,\u201d Breeze said.<\/p>\n

Fay does not know precisely why he\u2019s thriving, but he believes he\u2019s the beneficiary of a constellation of approaches.<\/p>\n

\u201cIn hindsight, the diet probably helped. The immunotherapy (in Los Angeles) probably helped,\u201d he said.<\/p>\n

And Dr. Breeze\u2019s gamma radiation treatments certainly have helped.<\/p>\n

\u201cWhen you have a serious cancer diagnosis, you need to find the best people. There\u2019s a pretty short list of those who are best and I think Dr. Breeze and his team are the best in the country,\u201d Fay said.<\/p>\n

Great care has literally been a matter of life and death for him.<\/p>\n

\u201cThe longer I can stay around, the closer we are to a cure for cancer.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

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