Responding to @collenyoung I'll try one more time!
My wife is a stage IV metastatic NSCLC patient with amplification of HER2 mutation commonly found in Breast Cancer, but also known to be found in Lung cancer patients. Her initial surgery was at Mayo Rochester in May, 2015 and she currently sees an oncologist locally here in South Carolina with annual followup with our Mayo oncologist in Jacksonville.
In the summer of 2016, unfortunatley her cancer had progressed and she was restaged to stage IV; a molecular study was ordered on a new lung biopsy by our Mayo oncologist, and she was subsequently accepted to the My Pathways clinical trial sponsored by Genetech.
However, since the trial was not available near our residence in South Carolina, our local oncologist applied for and obtained off-label approval of the drugs to be administered locally.

* Why did you decide to seek out a clinical trial? See above

* Did you go ahead with taking part in the trial? See above

* What was your experience?
-since beginning the infusions in December of 2016, my wife has responded beautifully! Her energy level is not great, but she manages to keep up with most of her normal activities.
- This trial uses a doublet of drugs which have been proven harmful to the heart in some cases. Therefore, it is important to align yourself with a cardiologist early in the administration of the infusions of the My Pathways trial. We did this and the sponsor insists on an echocardiogram following every third infusion...the results are studied by the oncologist and if approved, the infusions will continue.
- we just returned from our annual followup with our Mayo oncologist in Jacksonville, and the word is "stay the course"...keep doing whatever you are able.
- It is important that your oncologist understands the many nuances before determining the clinical trial. In our case there were two options (My Pathways or Match), and the oncologist informed us what the correct order of the two alternative trials available to us that needed to be followed, in case she were not responding to the drugs of the selected trial. Some trials will not permit application if the patient has had another specific trial prior...TALK TO YOUR ONCOLOGIST!

* What would you share with others?
- I am her caregiver and handle most of her correspondence and I read everything I can find regading the latest science relative to her cancer.
- If you have not had a molecular study done, ask your oncologist about it. Too many times, the patient's cancer progresses because the assumption is made that the tumor was the "same old lung cancer (in our instance)" and it indeed was not! Thankfully, we were not too late discoveing that our treatment was not the right one for her cancer! We had an excellent and very astute and caring oncologist at Mayo and we consider him our hero!
- Our support by family and friends is excellent. Our grown children and grandchildren all live a day or more drive from us...but we manage to see them often with frequent trips either direction! Our circle of friends is large and supportive with lots of activities!
- If you are a believer, trust in God...life on this planet is His plan-not ours! Prayer is most important in our opinion!
- we both have a strong belief in God and pray daily for his blessings and guidance.
- If you are not getting the treatment you need, don't be afraid to go elsewhere!

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