I took part in a clinical trial. Have you?

I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.

I haven't seen a thread regarding AllofUs, so I'll start one 😉

Has anyone else signed up for the All of Us Research program? I did, and I was contacted recently to fill out another survey, 3 surveys actually.
I just saw this online, its a data browser, shows the conditions currently in the research program. It's interesting, only 60 with myasthenia gravis for example.
https://databrowser.researchallofus.org

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!

I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.

@2011panc, how long is the trial period? In other words, how many years post transplant do they monitor you? Does this additional monitoring give you comfort? Was testing for the CRCA gene part of this same trial or genetic testing that you did for a different reason?

@colleenyoung The trial requires you to be more than one year post transplant. Readings are taken twice, one year apart. The additional testing is, to me, minimal. The testing for the BRCA gene was part of this trial, otherwise I would not have had it done because I have no other indications of a need for this testing. Not all testing results will be automatically released to me, but I am sure the BRCA gene test will be provided to all participants because it is such an important test in relation to successful treatments. I cannot say that the testing gives me comfort, per se. Knowing my particular and diverse medical history encouraged me to pursue this trial, as I believe that I have much to offer in many areas and for many people. I do not expect changes for myself, but hope to provide a better outcome for other people that may need to address any of the same issues with which I have dealt or am not dealing.

@burrkay, thanks for persisting after losing your original post. I really appreciate the indepth experience you shared as do many other members, I'm sure.

I'm confused by one issue. You mention that the center nearest you was not participating in the trial My Pathways, however, your local oncologist was able to get off-label permission to administer the trial protocol, correct? Does this mean your wife's data is not included in the study?