“Sometimes when you get your hands dirty, you begin to understand how this information can come together.” – Brian McCloskey
“One of the things that we’re trying to do is to move patients into more sophisticated testing.” – Brian McCloskey
Meeting Summary
As we approach the one year anniversary of the Prostate Cancer Lab, we have ten very active advanced prostate cancer patients pursuing tests, building a list of treatment options, and developing a strategy for what’s next. We wanted to take a step back and reflect on what we are seeing and learning from their experiences.
Brian McCloskey, co-founder of the Prostate Cancer Lab, shared patient stories, aggregated patient data, and drew out patterns and insights from the experiences of the ten active patients in our community. The process for each patient is to share their genomic information from DNA sequencing, RNA sequencing, and other tests, as well as their electronic medical records. Treatment options are then developed for each patient, including inputs from service providers such as CureMatch, Massive Bio, xCures, Cancer Commons, SHEPHERD Therapeutics, Genomic Expression, and mProbe. This information is then used to facilitate conversations between the patients and their care providers.
Mike Yancey and Rick Stanton shared their medical and disease journeys, using their PSA as a timeline, overlaid with different treatments.
What patterns can we see across advanced prostate cancer patients? Are there commonalities in their genomic mutations?
TP53 is far and away the most prevalent gene alteration across the ten patients, followed by TMPRSS2/ERG, PTEN, and then a lot of single gene alterations. There is no commonality in the combinations. Some of the patients share one or two gene alterations, but there are no two patients that look the same. On average, the patients have three alterations or biomarkers. The minimum is one, and the maximum is six.
How do you measure patient experiences?
Prostate cancer patients have many treatment options (including surgery, radiation, chemotherapies, androgen deprivation therapies, and immunotherapies). Each systemic treatment works for a while, and then it fails, and the patient moves on to another therapy. Brian looked at the years that each patient is getting for each systemic therapy before failure. For example, Brian has had five systemic therapies over six-and-a-half years. On average, he’s getting just over a year and a quarter from each therapy. Two patients are outliers. On the high end is Ken Anderson, who has gotten just over two years per systemic treatment. Ken has been living with aggressive cancer and bone mets, and he had over 25 rounds of chemotherapy (docetaxel). On the low end, unfortunately, is Mike Yancey, who is getting less than six months per systemic therapy. Any therapy that he takes has no durability. Once he completes his treatment, he gets two to three months after that, at best, and then the cancer is on the run again, and he needs to find another treatment.
What are the major findings about the Prostate Cancer Lab community?
We have a really engaged patient group. They are educating themselves and leaning in to try new tests and treatments. Patients are learning from each other.
What have we learned you should do if you are an advanced cancer patient?
- Use your existing genomic and other data to get a full portfolio of treatment options. There’s an opportunity to leverage our treatment-matching service partners to get more treatment options.
- Get deeper diagnostics if you can. If you can get the raw data from your diagnostics vendor, then you can take it to another vendor for additional insights. For example, Mike Yancey took his raw RNA data from Tempus to SHEPHERD Therapeutics for them to run their RNA seq analysis.
- Talk to your physician about how to maximize the useful life of your systemic therapies.
- Refresh your diagnostic data as you see more lines of therapy. Monitor your disease progression, such as getting weekly PSA tests.
- Gather your story into a one-page summary, including your PSA over time, overlaid with treatments, and the treatment options you are considering next, so that you can get advice on priorities and strategy.
The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.
