A Patient Uses Novel Testing Services to Guide His Treatment

"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) [#83] 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. Emma is that translator that allows me to be an active participant.” - 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. At the end of the day, we're responsible for our own decisions.

” – Brian McCloskey 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) [#83

isions. 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) [#83] 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.

"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) [#83] ●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?

ultiple 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’t 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.

"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) [#83] 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 ●Cancer patient Brad Power's journey and lessons learned.

0:03 ○Brad Power shares his cancer journey with lymphoma and how he applied lessons learned from the Cancer Patient Lab.

inciple 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’t 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.

"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) [#83] 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 ●Cancer patient Brad Power's journey and lessons learned.

0:03 ○Brad Power shares his cancer journey with lymphoma and how he applied lessons learned from the Cancer Patient Lab.

iagnosis. (48:24) 12.Personalized medicine and cancer diagnosis. (50:07) SUMMARY ●Cancer patient Brad Power's journey and lessons learned. 0:03 ○Brad Power shares his cancer journey with lymphoma and how he applied lessons learned from the Cancer Patient Lab. ●Lymphoma treatment options with 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 treatment options and diagnostics. 4:57 ○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. ●Cancer treatment options and testing services.

"A Patient Uses Novel Testing Services to Guide His Treatment" (Brad Power) [#83] ○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. ●Cancer testing and treatment options.

16:51 ○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. ●Cancer treatment options and clinical trials. 23:00 ○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.