Cancer Commons and SonALAsense: Putting Patients First
Learn more about Cancer Commons, an organization providing emotional support, clinical trial recommendations and other services for people who have been diagnosed with advanced cancer.
SonALAsense partner Cancer Commons provides emotional support, clinical trial recommendations and other services for people who have been diagnosed with advanced cancer. Recently, we met with founder Marty Tenenbaum, Ph.D., and senior scientist Adrienne Nugent, Ph.D., to discuss their origin, philosophy, and goals.
Marty, why did you create Cancer Commons?
I was diagnosed with stage 4 metastatic melanoma in 1998, which had a wicked prognosis. I was reading the research literature and getting very discouraged because, in those days, nothing worked for melanoma. I ended up going into a cancer vaccine trial. And while the trial failed overall, it did help me. Eventually, after around ten years of various treatments, I was cured.
One of my takeaways was how overwhelming it is for patients with late-stage cancer and how difficult it is to get unbiased, patient-centric information. We started Cancer Commons to work directly with patients to help them navigate their choices. We also wanted to create a learning machine that gathers data and makes the field smarter.
Initially, we created an informational site urging patients to get genomic testing. If their tumor had certain mutations, we could possibly guide them to more effective treatments. However, we realized we could do more for patients by providing hands-on help.
We’re working with companies, like SonALAsense, to create patient-focused solutions. These collaborations help us provide the best possible options for patients, but we try to come at it from a less biased standpoint. Companies have a vested interest in recruiting patients for their trials. But just because someone is a good patient for the trial doesn't mean the trial offers the best treatment for that patient. We’re looking for win-wins that primarily help patients but can also help companies move their therapies into the clinic.
Adrienne, describe your role at Cancer Commons
After patients register with us, I review their medical records and genomic profiles and try to understand what’s important to them. I ask patients whether they want to travel for treatment and identify barriers that might prevent them from participating in a trial. Then I create a list of options that fit those needs.
The final report describes trials, mechanisms of action and why they might be a good fit for that patient. Maybe they’re at second recurrence, so we highlight trials that are their last shot because they don’t accept patients once they reach third recurrence. Or it might be their first recurrence and we set up a progression of options for now and maybe a year from now. I enjoy helping patients find promising, exciting options.
It’s also rewarding to help patients avoid potential mistakes. Sometimes, their provider recommends a trial, but their cancer has none of the biomarkers that make that treatment successful. It’s not the provider’s fault – the field moves quickly, and it can be hard to stay on top of all the latest data. We think outside the box because our patients are motivated to think outside the box. To survive, they may need to explore radical options.
In my previous professional life, I tended to gravitate towards comfortable solutions, but this job requires the opposite approach. A path that seems comfortable could lead to bad choices for patients. Second line chemo sounds reasonable, but it’s generally not going to extend survival by much. We want to help people take educated risks.
Marty, you’ve mentioned that Cancer Commons is a “learning machine.” What does that mean?
It’s all about sharing knowledge. Patients are quite open about sharing what worked, or didn’t work, with their treatments. We share what we know, they share what they know, and that creates this wonderfully rich and vibrant knowledge community.
Patients have skin in the game, they dig everywhere and they come up with things we've never encountered. This patient crowdsourcing is really powerful. We haven't formalized it yet, but I want to create an early warning network, bringing patients and companies and researchers together to communicate on a higher level about new information, options, whatever is relevant to collectively share, align, and learn and take appropriate action if needed.
We’ve learned there's no single, optimal way to treat any cancer with the therapies we have. The optimal approach is, almost certainly, an individualized treatment cocktail. But it’s just one patient; you can’t run a trial on that. We try to leverage each bit of knowledge to advance that kind of individualized care.
In the real world, patients and their physicians are integrating multiple approaches, and we are capturing that data, integrating it with other sources and sharing. If we are successful, we will help a lot of patients get better outcomes, and precipitate some structural changes in oncology. Patients will have options they've never had before.
Adrienne, describe Cancer Commons’ relationship with SonALAsense
When I first learned about SonALAsense and sonodynamic therapy (SDT), it was eye-opening for me as a scientist. My background is in genomics and the classic approach is to find the gene variants that drive the cancer and target them. But that doesn’t really work with glioblastoma. Most drugs don’t get past the blood-brain barrier.
But sonodynamic therapy does and that’s exciting for patients because they feel stuck in their less-than-thrilling options. When we do a therapeutic analysis for glioblastoma patients, SDT often rises to the top because it’s novel and non-invasive and it’s an outpatient procedure at many sites around the country.
We also like the company’s approach. Meeting with April Freeman (SonALAsense’s Director of Patient Advocacy and Engagement), I was impressed by how passionate she is about patients. I love the way the company is both patient-centric and willing to work with a small organization like Cancer Commons to create better systems.
And it’s exciting to work with a company that truly cares about individual patients in addition to the overall glioblastoma population. We had a patient who was really interested in the SDT trial but had an allergy that excluded them. We reached out to April and she brought it to the board, who escalated it to the clinicians, and it became a big discussion – for one patient. It felt so empowering to me and the patient; they cared enough to have that conversation. To me, SonALAsense and Cancer Commons are a shining example of a mutually beneficial relationship that has positive and meaningful outcomes for patients.
August 17, 2023 at 7:00:00 PM