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 45, 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 $7 million for research into ALK-positive lung cancer.