Advanced Cancer Testing: Genomic & Molecular Profiling for Patients
Featuring: Brad Power, Co-founder and CEO of the Cancer Patient Lab; Brian McCloskey, Co-founder and COO of the Cancer Patient Lab
In short
Brad Power and Brian McCloskey, both cancer patients and co-founders of the Cancer Patient Lab, share how they used advanced testing services — including RNA sequencing, BostonGene, Massive Bio, SHEPHERD Therapeutics, and Cancer Commons — to find treatment options beyond standard care. They walk through the real-world challenges of accessing and interpreting these tests, and explain how patients can become active partners in their own treatment decisions.
- •Ask your care team about advanced tests like RNA sequencing, whole exome sequencing, proteomics, and functional testing — these can reveal treatment options that standard testing misses.
- •If your doctor doesn't know about a test or how to read the results, services like Cancer Commons can help translate reports and explain what your options mean in plain language.
- •Cost doesn't have to be a barrier — some companies, including Massive Bio and Travera, offer free or discounted services to patients, and the Cancer Patient Lab has negotiated deals with several preferred providers.
- •Follow up directly with your pathology department if you don't hear back about tissue testing — communication gaps between departments are common and can delay your results and treatment timeline.
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Brad Power January 24, 2024 “Emma has been there every step of the way, within a 24 hour response, telling me what this means. If I didn't have her, I don't think I would be useful.
Because the intention we have is for you to be a copilot, a partner, with your medical team, to be bringing ideas and to be able to participate, put your finger on the scale for the things that are important to you, whether it's quality of life, whether it's you want to try to hit a home run versus hitting singles, whatever it might be.
The patient has a point of view and has something to say in this, but you can't do it if you don't know what the options are, and what the tests are saying. ” - Brad Power “The standard of care is only going to get you so far. It's really incumbent upon the patient to push their care team.
You have to work with your care team, or a care team that doesn't have to be the one that you're currently with, to leverage all of the diagnostics that are available. One of the challenges is that many medical oncologists don't know about the tests, or they don't know how to interpret them. And it's really important that the patients get involved to create that bridge.
Translational medicine is how you take amazing science, that is, in many ways it's been proven that it works, take it from the lab and get it to the patient's bedside. But there are a lot of barriers that prevent that process from happening. But the role the patient has is really, really important because we do have a powerful voice.
Meeting Summary
Advanced cancer patients want to identify more and better treatment options and choose among them to find the best treatment options for their care. Testing can help with both objectives. But which tests are best, and how can patients access them?
The Cancer Patient Lab has hosted over two dozen discussions with experts about novel testing options, including RNA sequencing, liquid biopsies, proteomics, multiplex immunofluorescence, and functional testing. Brad Power, Co-founder and CEO of the Cancer Patient Lab, is uniquely qualified to talk about testing options and how to access them. On the one hand, he has been the host of most of these discussions with testing experts.
On the other hand, he was recently diagnosed with a recurrence of his cancer and needs to work with his medical team to make decisions on the tests he will get and interpreting the test results to make treatment decisions. Similarly, Brian McCloskey, Co-founder and COO of the Cancer Patient Lab, has developed relationships with testing and treatment matching companies, and used their services to guide his treatment decisions.
"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) Why should you invest in understanding testing options and advocate to get non- standard tests? Tests can identify new treatment options and help in selecting the best ones for you.
For example, Rick Stanton pushed to get an RNA sequencing test that identified that he had more of a protein, B7-H3, expressed in his cancer cells than normal, and there was a drug to inhibit it. He is currently on this drug and getting good results. What are the principles that should guide your approach to tests?
•“Mo’ data is mo’ bettah.” - Bryce Olson
•Tests identify treatment options.
•Tests guide treatment selection. You want to use data to make your treatment plan.
•Multiple (different) tests give more perspectives.
•I’ll be here again. Tests are not just for this treatment but future treatments and treatment strategy. Build your longitudinal story.
•Tissue is the issue. How can you use the test results to identify treatment options and guide your treatment decisions? 1.Use evolutionary biology and game theory to guide your treatment strategy - beyond next best. Minimize cancer heterogeneity. 2.Combine treatments, including immune system boosting therapies, e.g., exercise. 3.Invest in expert (“second”) opinions. 4.Favor immunotherapies. Avoid chemotherapy. 5.Strengthen your immune system and favor treatments that don’t hurt your immune system. 6.Pursue personalized dosing at minimum effective level. Consider toxicity. 7.Access new treatments as quickly as possible. 8.Choose the best doctors and clinics. 9.Get as much treatment as your body can take. 10.Dose as low as you can. What are the challenges in accessing and interpreting tests?
•Handoffs: There can be communication issues between departments that affect testing timelines. For example, the pathology department may be very busy sending out samples to testing companies.
•Financial: Financial challenges exist in accessing advanced testing technologies. Some startups provide services for free so they can get data. Most testing companies have financial support programs. The Cancer Patient Lab has special deals with its preferred providers. Most are free.
•Integrating data between tests: There's more value from getting different tests than getting more of the same test. Putting energy into getting multiple tests is a principle to give a more complete story of what's going on.
•Too much data: Most doctors don't have time to pay attention to the flood of data that we can actually bring to them. What should you do?
•Help yourself: Look beyond the standard of care and advocate to get tests and treatments that aren’ standard yet. Engaged patients get better outcomes.
•Tests that would not have happened without advocacy: Whole exome sequencing, RNA sequencing and interpretation, proteomics, functional testing, immunoprofiling
•Treatments that became options when considering clinical trials and travel: immunotherapies
•Treatment strategy: prioritize immunotherapies, consider clinical trials
•Help others: Share what you learn – patients as “hacktivists” - warriors and role models. Share your data. Post on social media. Contribute to a learning community.
•Help the system: Accelerate “translational medicine” – advocate to get research tests and treatments accessible to patients for clinical use. Compress the “S curves” from innovation to widespread use. Run experiments and scale what works. 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 Cancer Patient 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. Meeting Notes SUMMARY KEYWORDS tissue, tests, patients, testing, gene, work, treatment, boston, brian, treatment options, results, lab, data, lymphoma, brad, follicular lymphoma, cancer, emma, sequenced, talk SPEAKERS Brad Power (37%), Brian McCloskey (32%), Michael Hensley (10%), Rick Stanton (8%), Frank Nothaft (6%), Emma Shtivelman (3%), Saed Sayad (2%), Amit Gattani (2%) OUTLINE 1.Cancer patient Brad Power's journey and lessons learned. (0:03) 2.Lymphoma treatment options with patient history and current symptoms. (1:18) 3.Cancer treatment options and diagnostics. (4:57) 4.Cancer treatment options and testing services. (12:24) 5.Cancer testing and treatment options. (16:51) 6.Cancer treatment options and clinical trials. (23:00) 7.Lymphoma treatment options and side effects. (29:04) 8.Cancer treatment options and diagnostics. (32:53) 9.Medical testing and insurance coverage. (39:04) 10.Personalized cancer treatment and diagnostics. (42:37) 11.Testing accuracy in cancer diagnosis. (48:24) 12.Personalized medicine and cancer diagnosis. (50:07) SUMMARY
•Brad Power shares his cancer journey with lymphoma and how he applied lessons learned from the Cancer Patient Lab.
•Lymphoma treatment options with patie patient history and current symptoms. 1:18
•Brad Power shares his experience with follicular lymphoma, discussing his treatment history, including his recent cancer recurrence and upcoming treatment plan with Dr. Merryman at Dana Farber.
•Cancer Patient Lab offers a pipeline of services, including diagnostic testing and treatment guidance, for patients.
•The services can help identify new treatment options. For example, Rick Stanton, an advanced prostate cancer patient, discovered a new treatment option through RNA sequencing.
•Brian McCloskey emphasizes the importance of continuous learning and adaptation in cancer treatment, highlighting the need for ongoing testing and diagnostics to stay ahead of the disease.
•He advocates for a personalized approach to cancer treatment, encouraging patients to identify their own principles and priorities to guide their journey.
•Brian McCloskey and Brad Power discuss preferred testing and treatment guidance from the medical teams where they are being treated, and service providers, including BostonGene, Massive Bio, SHEPHERD Therapeutics and Cancer Commons.
•Brad Power emphasizes the importance of Emma Shtivelman of Cancer Commons in helping him navigate medical tests and treatments by providing quick and accurate interpretations of pathology reports and clinical trials.
•Massive Bio, provides free recommendations of clinical trials based on an individual's medical history and genomic information.
•Dana-Farber provides basic testing services, including CT and PET scans, while SHEPHERD Therapeutics analyzes RNA data for treatment options.
•Brad Power’s pathology report revealed follicular lymphoma, not diffuse large B- cell lymphoma, guiding treatment options.
•He is eagerly awaiting his BostonGene test results, which will take four weeks to arrive after his biopsy.
•He had to follow up with the pathology department after a week of silence to get his tissue tested, highlighting communication issues between departments.
•Brad Power and Rick Stanton discuss the timeline for tissue processing and its impact on cancer treatment.
•Brian McCloskey suggests process innovation and improvement for managing tissue.
•Brad Power expresses willingness to travel for the right deal.
•He will discuss treatment options with his doctor, including rituximab and lenalidomide, and new suggestions from Massive Bio.
•Immunotherapy is good for blood cancers. Bispecifics have good indications. CAR-T has some issues with efficacy and safety.
•Emma Shtivelman suggests avoiding chemotherapy for follicular lymphoma recurrence, preferring immunotherapies with fewer side effects.
•Brad Power and Frank Nothaft discuss the most effective treatment options for lymphoma, including combinatorial therapies and targeted drugs.
•Brian McCloskey emphasizes the importance of patients taking an active role in their care, including advocating for themselves and pushing their care teams to leverage diagnostic advancements.
•McCloskey and other patients on the call share their experiences with using diagnostics to identify new treatment options and help others in similar situations.
•Brian McCloskey mentions that some tests are free for patients through the Cancer Patient Lab, including functional testing with Travera.
•Brad Power and Rick Stanton discuss the cost of advanced testing options, with some companies offering free or discounted services to patients.
•Frank Nothaft and Brad Power discuss challenges in finding and affording cutting-edge medical tests, particularly for translational medicine.
•Brian McCloskey shares his experience with multiple sequencing tests, revealing concordance and differences between Tempus and BostonGene.
•Michael Hensley discusses challenges in tissue analysis, including exhaustion and quality metrics, and the importance of financial assistance programs for patients.
•He highlights the difficulty of finding payers to support new testing technologies, which are expensive and often face denials from insurance companies.
•Michael Hensley and Brian McCloskey discuss the challenges of accessing advanced diagnostics for cancer patients, including financial barriers and limited communication between healthcare providers.
•BostonGene and other labs sometimes have communication difficulties with healthcare providers, leading to delays in tissue analysis and treatment planning.
•Frank Nothaft discusses challenges in comparing results from different cancer testing modalities.
•Experts discuss the value of multiple tests in cancer diagnosis and treatment, including the use of liquid biopsies and cytogenetics.
•Reproducibility of genetic data analysis. 52:36
•Rick Stanton describes a test he ran demonstrating reproducible results in whole genome sequencing validated through 78 individual sequencing runs.
•Using data-driven approaches in cancer treatment. 55:12
•Brian McCloskey emphasizes the importance of data-driven decisions in cancer treatment, despite potential discrepancies in test results.
•Saed Sayad suggests comparing single cell data from the same patient for better understanding of disease nature.
Full transcript
Brian McCloskey Welcome to the Cancer Patient Lab. Today we have a special guest, none other than our co-founder and CEO, Brad Power. The reason that we are gathered here is to learn about Brad's cancer journey with lymphoma, and to understand how he has applied lessons learned from the Cancer Patient Lab, as well as services that we provide through the Cancer Patient Lab to address this part of his journey.
Brad Power
Our intention is 80% to share the pipeline that we've developed for testing options for people and a little bit into the treatment options, and then 20% to talk about my case as a test of that pipeline, and then also get any advice that anyone might have for me. Brad Power 2:17 My medical history is that I've had no evidence of disease for four years. I was originally diagnosed in 2018 with follicular lymphoma.
I went through the standard of care, which is a chemo cocktail called R-CHOP, and then went on maintenance. When we ran into the pandemic, we stopped the rituximab. Because it's lymphoma (a disease of the immune system), it's depressing your B cells (white blood cells), which means you don't respond well to a COVID vaccine. So we stopped it a little bit early so that I could get the COVID vaccine and be protected from COVID.
About two months ago, I was having some pain in my abdomen and it seemed like the symptoms I had had five years before. We did a CT scan, and it confirmed that I had had a recurrence. It basically shows up as the lymph nodes look bigger. Then they did a PET scan. Many of you probably know PET scans. It's where you get an injection of some radioactive stuff, and it lights up.
It shows where the cancer is, and how bright it is determines how aggressive it is. The column there indicates the tests that I initiated based on what I've learned from Cancer Patient Lab. Most of these are non-standard. We'll go into what the standard tests are. Typically, they take a biopsy to get tissue.
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