Amie's Story
Amie's story begins with a persistent unproductive cough in April of 2017.
She went to the walk in clinic in May and being a healthy, young non-smoker, the doctors thought it might be allergies. Allergy treatment didn't improve the cough, so she went back to her primary care doctor in June and tried treating another of the three main causes of persistent cough in healthy non-smokers: adult onset asthma. The inhaler got Amie through captaining another Ragnar Relay race in July, but the cough was persistent and not improving. A repeat trip back to the doctor found Amie on drugs for reflux, the third main cause of persistent cough. A few weeks on the drug didn't seem to improve the cough, so Amie headed to a specialist, had an endoscopy and a study with a chip implanted in my esophagus and a device she wore and pushed a button each time she coughed for 48 hours - that was a lot of button pushing! The results of that study showed mild reflux, but the reflux events were not aligning with that still persistent cough. This was September of 2017, and Amie had started back to work for the 2017-2018 school year, and soon found herself missing days of work. Anyone who knows Amie knows she isn't one to take a day off, but by Friday or even Thursday each week she was so tired and nauseated she couldn't function. Her primary care physician finally scheduled an appointment with a lung specialist and as a prerequisite for that visit, a chest X-ray was ordered. The order was placed on October 9th, 2017 and Amie went in that day for the x-ray which ultimately was the first in a whirlwind of tests. A CT scan, which led to my lung appointment being moved forward three weeks, then a biopsy that told us it was cancer. It was still another week or so before she finally received her full diagnosis: stage 4 adenocarcinoma of the lung. This is a cancer that is increasingly being seen in young female non-smokers- even what they call "never-smokers" like Amie.
Amie is fortunate to live in a part of the country where genetic testing for a cancer biopsy is part of routine care. Her cancer has a gene mutation known as ROS1 that is the driver for the abnormal growth of cells. The ROS1 mutation can be treated with targeted therapy.
Amie started treatment with Xalkori (crizotinib) targeted therapy on November 4, 2017. Targeted therapy consists of taking pills twice a day. Amie went back to work after only two weeks off for diagnosis and treatment start. Initial scans showed large scale reduction in all tumors, and subsequent scans continued to show reduction and stability.
Lung cancer is known to like to travel to the brain and grow there. A regular MRI of the brain picked up the smallest of tumors beginning to grow in fall of 2018, and Amie underwent successful radiation to zap and remove that tumor in December of 2018. Meanwhile treatment with Xalkori continued until the first signs of growth appeared in the CT scans in April of 2019. Xalkori has an average of 17 months of progression free treatment so it wasn't unexpected to see growth begin again. The September 2019 scans confirmed slow growth in two lymph nodes, and so a change in treatment was initiated.
A stage two trial of a promising new drug known as TPX-0005 or Repotrectinib was enrolling patients. This drug was known job of crossing the blood-brain barrier, and had shown good action in controlling ROS1 positive tumor growth during the stage one trials. Amie started the approval process and met with an ironic delay - her tumor growth wasn't large enough yet to enroll her. After a delay to allow for enough growth, the final approval scans in January of 2019 revealed a possible disqualification - a new tumor had shown up in the brain. Repotrectinib had shown better ability to cross the blood brain barrier than Xalkori, and the first set of scans after starting on the repotrectinib trial showed the brain tumor gone, and the growing lymph nodes had shrunk back to their expected size.
Repotrectinib controlled Amie's cancer very well, but unfortunately, it also caused a lung inflammation called pneumonitis. In the spring of 2021 Amie paused treatment with repotrectinib to allow the pneumonitis to be treated. She recovered just within the six weeks allowed in order to be able to resume the trial, and got six more months out of the trial drug.
In September of 2021 the pneumonitis returned, and trial protocol specifies that when the pneumonitis returns, the patient must exit the trial. Amie now is waiting to begin the last of the approved TKIs for ROS1 patients: lorlatinib.
It was with the need for more treatment options in mind that Lungbuster was created to raise funds into ROS1 cancer research.
Want to keep up on Amie's progress? You can follow her Caring Bridge site for updates.
She went to the walk in clinic in May and being a healthy, young non-smoker, the doctors thought it might be allergies. Allergy treatment didn't improve the cough, so she went back to her primary care doctor in June and tried treating another of the three main causes of persistent cough in healthy non-smokers: adult onset asthma. The inhaler got Amie through captaining another Ragnar Relay race in July, but the cough was persistent and not improving. A repeat trip back to the doctor found Amie on drugs for reflux, the third main cause of persistent cough. A few weeks on the drug didn't seem to improve the cough, so Amie headed to a specialist, had an endoscopy and a study with a chip implanted in my esophagus and a device she wore and pushed a button each time she coughed for 48 hours - that was a lot of button pushing! The results of that study showed mild reflux, but the reflux events were not aligning with that still persistent cough. This was September of 2017, and Amie had started back to work for the 2017-2018 school year, and soon found herself missing days of work. Anyone who knows Amie knows she isn't one to take a day off, but by Friday or even Thursday each week she was so tired and nauseated she couldn't function. Her primary care physician finally scheduled an appointment with a lung specialist and as a prerequisite for that visit, a chest X-ray was ordered. The order was placed on October 9th, 2017 and Amie went in that day for the x-ray which ultimately was the first in a whirlwind of tests. A CT scan, which led to my lung appointment being moved forward three weeks, then a biopsy that told us it was cancer. It was still another week or so before she finally received her full diagnosis: stage 4 adenocarcinoma of the lung. This is a cancer that is increasingly being seen in young female non-smokers- even what they call "never-smokers" like Amie.
Amie is fortunate to live in a part of the country where genetic testing for a cancer biopsy is part of routine care. Her cancer has a gene mutation known as ROS1 that is the driver for the abnormal growth of cells. The ROS1 mutation can be treated with targeted therapy.
Amie started treatment with Xalkori (crizotinib) targeted therapy on November 4, 2017. Targeted therapy consists of taking pills twice a day. Amie went back to work after only two weeks off for diagnosis and treatment start. Initial scans showed large scale reduction in all tumors, and subsequent scans continued to show reduction and stability.
Lung cancer is known to like to travel to the brain and grow there. A regular MRI of the brain picked up the smallest of tumors beginning to grow in fall of 2018, and Amie underwent successful radiation to zap and remove that tumor in December of 2018. Meanwhile treatment with Xalkori continued until the first signs of growth appeared in the CT scans in April of 2019. Xalkori has an average of 17 months of progression free treatment so it wasn't unexpected to see growth begin again. The September 2019 scans confirmed slow growth in two lymph nodes, and so a change in treatment was initiated.
A stage two trial of a promising new drug known as TPX-0005 or Repotrectinib was enrolling patients. This drug was known job of crossing the blood-brain barrier, and had shown good action in controlling ROS1 positive tumor growth during the stage one trials. Amie started the approval process and met with an ironic delay - her tumor growth wasn't large enough yet to enroll her. After a delay to allow for enough growth, the final approval scans in January of 2019 revealed a possible disqualification - a new tumor had shown up in the brain. Repotrectinib had shown better ability to cross the blood brain barrier than Xalkori, and the first set of scans after starting on the repotrectinib trial showed the brain tumor gone, and the growing lymph nodes had shrunk back to their expected size.
Repotrectinib controlled Amie's cancer very well, but unfortunately, it also caused a lung inflammation called pneumonitis. In the spring of 2021 Amie paused treatment with repotrectinib to allow the pneumonitis to be treated. She recovered just within the six weeks allowed in order to be able to resume the trial, and got six more months out of the trial drug.
In September of 2021 the pneumonitis returned, and trial protocol specifies that when the pneumonitis returns, the patient must exit the trial. Amie now is waiting to begin the last of the approved TKIs for ROS1 patients: lorlatinib.
It was with the need for more treatment options in mind that Lungbuster was created to raise funds into ROS1 cancer research.
Want to keep up on Amie's progress? You can follow her Caring Bridge site for updates.
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