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Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

Behind the Scenes at Cancer Commons: Working with Patients

Curious Dr. George
Cancer Commons Contributing Editor George Lundberg, MD, is the face and curator of this invitation-only column.

Emma Shtivelman, PhD
Cancer Commons Chief Scientist

Cancer Commons helps advanced cancer patients identify and access their best-possible treatments. Here, our Curious Dr. George asks Chief Scientist Emma Shtivelman, PhD, for an inside look at how she helps the people who turn to us for guidance.

Curious Dr. George: As Chief Scientist at Cancer Commons for many years, you have helped thousands of patients with advanced cancer to better understand their options in difficult circumstances. What is the process you typically follow to provide useful information in a compassionate manner without instilling false hope?

Emma Shtivelman, PhD: The “simple” goal of Cancer Commons is to help cancer patients to find better treatments. Most of the patients who register with Cancer Commons have advanced or metastatic cancers, and the range of questions they ask is very wide. To name a few: requests to find clinical trials, advice for dealing with adverse effects of treatments, questions about drugs’ efficacy and side effects, suggestions for the “best” oncologist near them, and more.

To answer these questions, here is the process I follow:

  • Collect and review all relevant medical records after securing the patient’s consent to share them.
  • Decide whether the patient needs a new treatment (most often they do, because patients typically contact us when they experience progression) or a new oncologist.
  • If indicated, suggest seeking a second opinion at a nearby comprehensive cancer center.
  • Mutational profiling often opens new treatment options for cancer patients. Thanks to our collaboration with the company Tempus, we offer mutational testing to Cancer Common patients who have no other means to have this done—even though it should be an integral part of modern cancer care. The results, which we can access immediately and directly, often generate suggestions for new treatment options.
  • If the patient’s performance status does not warrant further active treatment, we may suggest considering palliative care only, or hospice, usually in support of the opinion of the treating oncologist. These are difficult emails and calls. Some patients (and often their caregivers) do not understand the gravity of their situation.
  • Search for clinical trials: I have always considered finding relevant clinical trials as the most important contribution Cancer Commons can make to patients’ treatment. I try to suggest trials with investigational drugs that have, preferably, preliminary evidence of clinical activity, or at least very strong evidence of relevant preclinical activity. The search for clinical trials can be both the most rewarding and most frustrating part of my work. If I see a highly relevant trial, I rejoice, but later I may hear from patients that they are unable to enroll for a variety of reasons. For instance, travel for trial treatment may be not feasible, the treating oncologist might prefer to start another line of chemotherapy (which may make patient ineligible for most trials in the future), or the particular cohort may no longer be enrolling at a trial site nearby.

My work with patients can pose significant challenges. Here are the major problems that can arise:

  • Patients often do not provide relevant information about their conditions and treatments, because they may not have a clear understanding of what information is most important, or because they do not have access to their medical records.
  • Patients sometimes seek only “alternative” treatments not supported by clinical evidence.
  • Because I communicate with patients and not with their doctors, the information I provide—in particular about relevant clinical trials—may not be conveyed to or discussed with the treating oncologist. Some patients are hesitant to do so because they are afraid to offend their doctors. Others may have difficulty understanding the information they receive and dismiss it.
  • The most daunting obstacles I face have to do with obscure and often inconsequential medical history that excludes patients from participating in clinical trials. For a given patient, I can easily screen out trials based on listed eligibility criteria (such as preexisting health conditions, organ dysfunction, brain metastases, HIV infection, number of previous lines of treatment, or previous malignancies). However, on occasion, we encounter what I consider to be unjustified pre-existing conditions that preclude enrollment. Two examples of this are a left bundled branch block in a patient without a history of heart disease and asymptomatic pulmonary mycobacterium avium complex diagnosed incidentally 15 years earlier. When trial exclusion happens because of rigid and hard-to-justify trial protocols, it is very frustrating for me and the patients I work with.

Despite the challenges of our work, I always hope, and sometimes know, that patients and their oncologists can arrive at new, more promising treatments based on Cancer Commons’ personalized research. This is what drives me to continue working with cancer patients.

Dr. Shtivelman can be reached at emma@cancercommons.org.

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Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

What Is a Cancer Commons Options Report?

Curious Dr. George
Cancer Commons Contributing Editor George Lundberg, MD, is the face and curator of this invitation-only column.

Lola Rahib, PhD Lead Scientist in Pancreatic Cancer at Cancer Commons

As a Cancer Commons Scientist, Lola Rahib, PhD, helps cancer patients and caregivers navigate treatment. Some of these patients receive a Cancer Commons Options Report. Here, our Curious Dr. George asks Dr. Rahib to share what goes into each Options Report.

Curious Dr. George: Cancer Commons provides advanced cancer patients who seek information with additional options for them to consider, all free of charge. What does a typical Cancer Commons Options Report consist of and look like?

The first page of the report contains information about the patient, including patient goals, molecular alterations, and a short case summary. Patient goals may include treatment and quality of life goals, ability to travel for treatment, and any other life goals or preferences the patient or their caregiver shares with us. The molecular alterations section is extracted from the patient’s molecular profiling report(s). Molecular profiling is an important consideration, as it can guide treatment. The short case summary gives a brief overview of the patient’s diagnosis and treatment history.

The report also contains a comprehensive, personalized case summary detailing the patient’s cancer history. The personalized case summary is created by reviewing the patient’s medical records, and includes information about the patient’s diagnosis, pathology, treatment history, treatment response, genomic sequencing, and other testing as available. This detailed summary is found at the end of the report and may be helpful for patients to take with them to appointments, especially if they are visiting with a new physician.

A sample Cancer Commons Options Report; click to see full report.

The detailed summary is used to generate personalized therapeutic options, including investigational therapies, clinical trials, off-label combinations, and testing modalities such as next generation sequencing, liquid biopsies, and other diagnostics. These options are presented in a table format with therapy descriptions and scientific rationale. Molecular targets for specific treatment options are indicated when appropriate.

Feedback and consensus from a Virtual Tumor Board is also provided when applicable. Currently, Cancer Commons has a Virtual Tumor Board program for brain and pancreatic cancer patients. The Virtual Tumor Board program allows Cancer Commons to present a patient’s case to nationally recognized experts. The panel performs a comprehensive review of the patient’s diagnosis, treatment history, molecular profiling, genetics, and other relevant information. Based on this information they discuss and provide feedback on treatment options including clinical trials, and any further diagnostics and evaluations. This feedback is provided in a summary along with the detailed treatment options.

The final decision regarding tests and treatments is always up to the patient and their care team. We encourage patients to discuss these options with their treating oncologist.

We capture decisions and rationales, and patients’ progress is monitored over time. This supports learnings and insights from every patient. Our artificial intelligence platform uses the Virtual Tumor Board’s recommendations, treatment decisions, and clinical results to get smarter. Our goal is to continuously learn from every patient’s experience and use that knowledge in real-time to help the next patient.

Dr. Rahib can be reached at lola.rahib@cancercommons.org.

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Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

What Sets Cancer Commons Apart?

Erika Vial Monteverdi, Executive Director of Cancer Commons

Cancer Commons is a patient-centric, nonprofit network of patients, physicians, and scientists that helps identify the best options for treating an individual’s cancer. Here, our Curious Dr. George asks executive director Erika Vial Monteverdi what sets Cancer Commons apart.

Q: As the Executive Director of Cancer Commons, how do you consider our approach to be uniquely different from that of many other organizations working to change the paradigm of cancer treatment?

A: Cancer Commons’ approach arises from the simple yet powerful fact that no two patients and their cancers are exactly alike. Supercomputers and “big data” present promising possibilities to advance cancer treatment. However, we believe that such efforts will fall short without also improving the use of existing information, coupled with expert doctors’ insights.

More to the point, every doctor would agree that, when it comes to making treatment decisions for very sick, one-of-a kind patients, the judgment of the best experts in the world coupled with existing data would be more convincing than existing data alone. In fact, we have seen that doctors will accept the judgments of experts when that judgment differs from their own, and are less likely to change their treatment plan based upon data alone.

Cancer Commons and our team of experts focus on advanced cancer patients for whom the treatment data are particularly thin, the treatment cost is particularly high, and the treatment success rate is particularly low. Our mission is to be the preeminent resource for advanced cancer patients by breaking down knowledge barriers to save lives.

In a currently fragmented U.S. healthcare system—with variation and disparity in cancer care, as well as a lack of information and resources for patients—Cancer Commons is especially important for those with hard-to-treat cancers who have exhausted standard-of-care options and often feel left alone to navigate next steps. These are the patients who are asking, what now?

We connect patients and their families to our Nurse Navigators and PhD Scientists, who combine a compassionate approach with deep scientific knowledge of cancer to help advanced cancer patients understand their disease and identify and access the best personalized tests, clinical trials, and treatments.

Our solution enables a patient-centric network of patients, nurse navigators, scientists, physicians and national experts to collectively reason and deliver a plan to patients. We elevate the patient to equal status of other industry stakeholders by cutting across organizational and information barriers and combining available knowledge with clinical experience to focus on what is best for each individual. We then apply those learnings to help the next similar patient.

Cancer Commons differentiates itself from all other cancer organizations through our transformative process, which aims to continuously learn from the experiences of all patients, on all treatments, all the time.

For anyone who is wondering, “what now?” for themselves or for a loved one with cancer, I encourage you to register now to get support from Cancer Commons.