Amie's Story
Amie's story began with a persistent unproductive cough in April of 2017.
Over the next six months she made several trips to the doctor to try and figure out what was wrong. Treatments for seasonal allergies, adult onset asthma and acid reflux didn't improve the cough. Her primary care physician finally scheduled an appointment with a lung specialist in September of 2017 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. Next up was a CT scan, which led to her lung appointment being moved forward three weeks, then a biopsy that gave the bad news: 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. With a stage IV diagnosis, the objective of treatment was not to cure, but to control the cancer and keep it from spreading. There are currently no known cures for stage IV cancer.
Amie started treatment with Xalkori (crizotinib) targeted therapy on November 4, 2017. Targeted therapy consists of taking pills instead of a traditional chemotherapy infusion. Amie went back to work after only two weeks off. 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.
When treating stage IV lung cancer using a TKI targeted therapy, the drug acts to suppress the cancer's growth. Over time the cancer inevitably finds a way around the suppression and begins to grow again. This is why it is important to continue to research new drugs and treatment measures. The length of time a TKI works for any one patient varies. Some patients may get a few months out of a drug before they need to switch, while others may be able to use one drug for years. We don't know what makes the difference in the amount of time each person gets from their TKIs, it's another question worth some research!
When Xalkori failed to continue suppressing Amie's cancer, a phase two trial of a promising new drug known as TPX-0005 or Repotrectinib was enrolling patients. This drug had shown good action in controlling ROS1 positive tumor growth during the phase 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 specified that when the pneumonitis returns, the patient must exit the trial.
At that point, Amie began treatment with the last of the approved TKIs for ROS1 patients: lorlatinib. Lorlatinib did work in the brain, treating another small brain tumor that had presented itself during the September scans, but it unfortunately didn't work in the chest. The cough returned as a signal that all wasn't well. Scans showed signs of pneumonitis and "fluffy" growth in the lungs that indicated a return of active cancer.
As of this time, there are no further targeted therapy drugs approved to treat ROS1+ cancer. There are three currently in trials, but with a history of drug induced pneumonitis, Amie was disqualified from participating in those trials.
In March of 2022, Amie began treatment with traditional chemotherapy. She had four rounds of carboplatin and pemetrexed infusions, each three weeks apart. Carboplatin is hard to tolerate, so after four rounds of the combined drugs, she moved to a maintenance infusions of pemetrexed every three weeks. The chemotherapy knocked back the active cancer growth, and the tumor remained stable. The every three week chemotherapy cycle was hard, so in October of 2023 when a new trial opportunity became available, Amie enrolled in that trial.
As of the 2024 Lungbuster, she's still doing well with the trial drug holding her tumors stable. There's still always that worry about what will be available in the future should the trial drug stop working. It was with this need for more treatment options in mind that Lungbuster was created.
Thank you for helping us raise funds for ROS1 cancer research!
Want to keep up on Amie's progress? You can follow her CaringBridge site for updates.
Over the next six months she made several trips to the doctor to try and figure out what was wrong. Treatments for seasonal allergies, adult onset asthma and acid reflux didn't improve the cough. Her primary care physician finally scheduled an appointment with a lung specialist in September of 2017 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. Next up was a CT scan, which led to her lung appointment being moved forward three weeks, then a biopsy that gave the bad news: 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. With a stage IV diagnosis, the objective of treatment was not to cure, but to control the cancer and keep it from spreading. There are currently no known cures for stage IV cancer.
Amie started treatment with Xalkori (crizotinib) targeted therapy on November 4, 2017. Targeted therapy consists of taking pills instead of a traditional chemotherapy infusion. Amie went back to work after only two weeks off. 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.
When treating stage IV lung cancer using a TKI targeted therapy, the drug acts to suppress the cancer's growth. Over time the cancer inevitably finds a way around the suppression and begins to grow again. This is why it is important to continue to research new drugs and treatment measures. The length of time a TKI works for any one patient varies. Some patients may get a few months out of a drug before they need to switch, while others may be able to use one drug for years. We don't know what makes the difference in the amount of time each person gets from their TKIs, it's another question worth some research!
When Xalkori failed to continue suppressing Amie's cancer, a phase two trial of a promising new drug known as TPX-0005 or Repotrectinib was enrolling patients. This drug had shown good action in controlling ROS1 positive tumor growth during the phase 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 specified that when the pneumonitis returns, the patient must exit the trial.
At that point, Amie began treatment with the last of the approved TKIs for ROS1 patients: lorlatinib. Lorlatinib did work in the brain, treating another small brain tumor that had presented itself during the September scans, but it unfortunately didn't work in the chest. The cough returned as a signal that all wasn't well. Scans showed signs of pneumonitis and "fluffy" growth in the lungs that indicated a return of active cancer.
As of this time, there are no further targeted therapy drugs approved to treat ROS1+ cancer. There are three currently in trials, but with a history of drug induced pneumonitis, Amie was disqualified from participating in those trials.
In March of 2022, Amie began treatment with traditional chemotherapy. She had four rounds of carboplatin and pemetrexed infusions, each three weeks apart. Carboplatin is hard to tolerate, so after four rounds of the combined drugs, she moved to a maintenance infusions of pemetrexed every three weeks. The chemotherapy knocked back the active cancer growth, and the tumor remained stable. The every three week chemotherapy cycle was hard, so in October of 2023 when a new trial opportunity became available, Amie enrolled in that trial.
As of the 2024 Lungbuster, she's still doing well with the trial drug holding her tumors stable. There's still always that worry about what will be available in the future should the trial drug stop working. It was with this need for more treatment options in mind that Lungbuster was created.
Thank you for helping us raise funds for ROS1 cancer research!
Want to keep up on Amie's progress? You can follow her CaringBridge site for updates.
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