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Lung cancer patient 'going for the cure'

Jogging through the lush hills of her Tennessee home, Amanda Nerstad found herself unexpectedly gasping for breath. A friend had just been diagnosed with pneumonia, and the vibrant young mom and flight attendant wondered if she might have the same.

A trip to her local urgent care that day in 2016 launched a harrowing medical journey, and within days, Amanda, who is a non-smoker and diligent about health and fitness, was diagnosed with stage IV lung cancer. Told by her surgeon that she might have as little as two weeks to live, Amanda’s first thought was of her precious little girls, Isabella and Greta.

“I put notes in their lunchboxes every morning - have a great day, Mommy loves you - and I thought, ‘who’s going to write their notes?’ It was devastating.’’

In search of clues as to what was driving Amanda’s cancer to determine the best treatment option, her oncologist ordered more tests. After waiting nearly two uncertain weeks for results of biomarker testing, Amanda and her family found something quite powerful - hope.

 

‘Like I won the lottery’

 

Amanda, now 43, tested positive for a change in the anaplastic lymphoma kinase - or ALK - gene, found in about 4 percent of all cases of non-small cell lung cancer. This meant that she was a candidate for treatment targeted specifically for people who test positive for this mutation.

“My oncologist called and said it was like I had won the lottery - I was ALK positive. At the time I had no idea what that meant, but he told us it was great news and we should be celebrating. After the call, my husband Gary and I sat on our front steps and we knew this was a wink from God, to let us know that he was with us.”

The first few months of treatment left Amanda exhausted and ill, with little energy to do what she loves most - spending time with family. Her doctor suggested a new therapy, also targeting ALK, and Amanda is now celebrating a complete metabolic response, with no evidence of disease and very few side effects from the daily medication.

She’s also on a mission to spread the word about lung cancer and the importance of biomarker testing. During the early days of her diagnosis, a friend suggested that Amanda look for an ALK-positive cancer support group on Facebook, and there she found information and kindness from others who understood what she was going through - many of them young, non-smoking, busy moms like herself, battling lung cancer.

“It was really wonderful to hear other people’s journeys, and to find this amazing support,” Amanda recalls.

She and Gary have taken their involvement with the ALK Positive support group to the next level, fundraising for research and the ultimate goal of a cure. The group has raised more than $1.9 million for research into ALK-positive lung cancer.

Lemonade for a cure

 

“We’re going for the cure,” Amanda says. “Having ALK-positive lung cancer has given us a platform to raise money for research for that cure.”

Isabella, 11, and Greta, 8, are helping mom and dad lead fundraising efforts.

“Our family writes a summer bucket list - all the things we want to do that summer - and during the summer of 2017, my daughter said, ’Let’s have a lemonade stand.’ She suggested we do it for a cause. I thought she would want to raise money for a dog shelter or puppies, but she said, ‘How about lung cancer?’ I held back the tears. I was really proud of her.“

With strong family and community support and donations, the Nerstads have held three lemonade stands that have raised more than $55,000 for lung cancer research, simply by selling one cup of lemonade at a time.

Amanda has waged battle on two fronts – one against the tumor in her lung, and the other against the negative bias toward lung cancer patients.

“A stigma surrounds lung cancer in that everyone wants to know what you did to get it,” Amanda says. “No one ever asks a woman with breast cancer how she got it, but one of the first questions everyone asks me is whether I smoked. It’s important to know that anyone who has lungs can get lung cancer.”

Amanda and the lung cancer community are working to change these conversations through education, awareness and actively supporting lung cancer patients.

 

Surrounded by positivity

 

The Nerstads find joy in making a difference for other cancer warriors, and in the sweet moments wrapped tightly in the love of family. “We are very determined in every aspect of our life because time is very, very important to us. We live in the now, and enjoy the moments.”

And how lovely the moments are - the sound of laughter around the dinner table and snuggles on the couch with a favorite movie.

The Nerstad four are grounded in optimism, fortified by their faith.

“We surround ourselves with positivity, and embrace every day together,” Amanda says. “It’s been quite a journey, and we believe our future is bright. We are going for the cure.”

References
  1. World Health Organization website. Accessed Nov.8, 2019. https://www.who.int/news-room/fact-sheets/detail/cancer.