About

First Name
William

State/Province
SC

Posts (105)

Sun, Jul 14 7:39am · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Done! Thank you for doing this Teresa!

Mon, Jul 8 5:04pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Hi Carla-
Not sure what your doctors are referring to as "no interesting genes or mutations", but like others suggested ASK QUESTIONS,UNTIL THEY ARE TIRED OF HEARING FROM YOU! Tell them you want a scientific answer with true definition. Don’t hold back!
Seems like the standard answer when the oncologist immediately goes to immunotherapy…you don’t want off the shelf “canned” solutions!
Ask them about a molecular study of the biopsies…if you need a fresh biopsy, get it done. How can they treat the cancer with any level of science unless they know specifically what the mutation is?
My wife was put on immunotherapy and after months of treatments they found her cancer getting even more aggressive…they ordered a molecular study and found that hers is a HERR2, ERBB2 mutation in her lung, which does not respond to the “Off the shelf” immunotherapy drugs. Our oncologist told her that normal prognosis for her cancer would be 9 months. That was in 2016…she is still on the planet today because the molecular study led to her oncologist putting her on a clinical trial-with treatment. Her quality of life is excellent!
So…end of my epistles…ask questions and get answers!
Good luck!

Wed, Jun 5 12:01pm · I took part in a clinical trial. Have you? in Just Want to Talk

Thanks Colleen…
It is important for members to know that access to a clinical trial may be “closed” in your state…as was the case for us.
However, at the time the study was available in Florida. So the process required application for the study in Florida. We did that through our Mayo oncologist in Florida.
Once approved, our local oncologist wrote a “letter of compassion” to the RX manufacturer…asking for permission to administer the protocols locally.
Otherwise, we would have been required to travel 6 hrs each way every 3 weeks for the therapy!
The manufacturer gave a positive response in very short order!

Mon, Jun 3 2:57pm · I took part in a clinical trial. Have you? in Just Want to Talk

Hi Teresa…thanks for sharing this. I will check it out!

Mon, Jun 3 1:36pm · I took part in a clinical trial. Have you? in Just Want to Talk

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!

Mon, Jun 3 12:37pm · I took part in a clinical trial. Have you? in Just Want to Talk

Responding to @colleenyoung I tried, but the after considerable typing, the web page shut down.
Did you get the response?

Thu, May 23 4:57pm · Stage IV lung cancer, what treatments work for you? in Lung Cancer

In my wife’s case, the Foundation One molecular study identified two mutations…one of which was a “a HER2 Targetable mutation…Erbb2”… from a family of genes often seen in breast cancer, but also found in lung cancer. Also found in stomach or esophageal cancer…it has been reported that these mutations can occur in lung cancer…the challenge was that at the time, there were no FDA approved drugs for this mutation in lung cancer.
But a Genetech sponsored clinical trial known as My Pathway was identified…that my wife qualified for…she has responded well to the infusions now for 28 months. Concerns are with possible known side effects caused by the drugs. So, they monitor her heart closely.
We are so grateful for our oncologist who suggested the study and his jurisprudence with selecting the clinical trial, which has given her an excellent quality of life for the past two plus years!

Wed, May 22 10:26pm · Stage IV lung cancer, what treatments work for you? in Lung Cancer

Welcome to MayoConnect, and sorry to hear about your diagnosis. However, I am always happy to hear about patients who get a molecular study and their doctor orders the correct therapy for their cancer!
Our experience was not good until the doctor did order the study and learned that my wife had a HER2 amplification with a Erbb2 mutation. Once he learned that he put my wife on a Targeted therapy that has worked wonders for the past 28 months.
Good luck!