Biomarker Testing: Still Not Standard
This past weekend, I joined Lung Force, ALA, and Peer Medical to learn more about the Peer Medical system and see what Lung Force is working on. I was approached several years ago by a man, Ed Speigal, who had this idea of a database. This database allows lung cancer patients to upload their portal information and then they can compare their treatment to others. The system is anonymous and you can message others if you have questions or do want to meet.
I think of it as a "Match.com" for lung cancer. I met Ed the night before the event to go over a few items in the system. It's not totally complete and he needed a patient. I've always been the guinea pig, so I volunteered.
So many EGFR patients start on chemotherapy
Patient history of medications, treatments, and hospitals are available. Patients are listed as a string numbers and letters to keep them anonymous. As I was going through the database, which currently only contains EGFR patients, I noticed a great many with my mutation starting on chemotherapy. The oncologist sent off for the biomarker testing because the treatment would change to tagrisso or another targeted therapy the same year.
Why is the default chemo?
I found this to be a bit discerning. I understand 7-8 years ago, oncologists wanting to start patients on chemotherapy immediately. However, it currently only takes approximately 2 weeks to get those results. If we already know this is a slow growing cancer, I am confused as to why hospitals are starting patients on traditional chemo as late as 2017, before the biomarker results were obtained.
Chemotherapy is essentially poison for your body. It kills both good and bad cells leading to a weakened immune system and risk of infection. I've learned that when you have lung cancer, you have to be your own advocate. You need the support of other patients as well.
Promoting clinical trial awareness
When this database is totally finished, I will be referring all of the new patients I have to it. Maybe it will give them a shot at better care. It's an amazing tool that Mr. Spiegal has worked so hard on. If you are EGFR, you can sign up by googling "Peer Medical".
I was also able to see what clinical trials people in my situation were on. This proves to be extremely helpful when it's decision time for another medication. None of them lasts forever. It also gives me an idea of what hospital I may want to go to.
A new way to find patients like me
Another one of the many features I'm excited about is the ability to identify cancer clusters. When prompted you enter your zip code, so you are able to see how many people in your area are suffering the same illness. Eventually, the database will be for all cancers and possibly chronic illnesses. If tracking by zip code, this could definitely help identify cancer clusters.
Hospitals in rural areas need to inform their patients of the existence. So many oncologists treat such a broad spectrum of patients, they can barely keep up with changes in the industry.
We must stay informed and advocate for ourselves
Yes, we have cancer and it sucks. But we must keep fighting for ourselves. Talking to others in the same situation is a wonderful way to begin. We must research for ourselves before starting new treatments. There are so many coming down the pipeline so fast, it's hard to keep up. And there are patient leaders in each biomarker setting that are willing to help you.
Just know that you are not alone. There are so many people in this country fighting this disease with all they have. We can only pray we survive it.
Learn more about Peer Medical in How Big Data Can Help You & the Lung Cancer Community.
Do you have a pet?