Coronavirus Ask the Expert Webinars

There used to be a stigma surrounding participation in clinical trials. Moving into 2021, patients have a more nuanced understanding but questions remain: How will I be monitored? How will my care team change? How does Covid fit into all this?

Watch our discussion between our host Ruth Fein, Dr. Gabriela Hobbs, active clinical researcher and leader of the MPN research program at Massachusetts General Hospital, and Dr. Angela Fleishman, Assistant Professor of Medicine at the Institute for Immunology at the University of California, Irvine. They discussed clinical trials in the age of combination therapies, finding a clinical trial that may be right for you and more.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power in partnership with the MPN Research Foundation. Patient Power is solely responsible for program content.

Navigating the landscape of CLL testing can be overwhelming. What does your blood test result mean? Measurable Residual Disease (MRD) testing allows people to stop therapy, but how does that impact you? What trends can my test results reveal about my overall health?

Experts answered important questions about radiation, CT scans, MRI, bloodwork, and biopsy. Patient Power Co-Founder and CLL Survivor Andrew Schorr was joined by Dr. Susan LeCLair, (retd.) Chancellor professor, Department of Medical Laboratory Science at University of Massachusetts, and Dr. Adam Kittai, Hematologist at OSU Comprehensive Cancer Center, for this expert panel.

This program is sponsored by AbbVie, Inc. and Genentech, Inc. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content. 

Whether you have been newly diagnosed with CLL or are returning for further treatment, it can be overwhelming to research and choose a CLL treatment pathway. With factors such as cost, side effects, usage, and now with multiple treatment options to choose from, how do you choose the right and most effective treatment to continue living your life the way you want?

Patient Power Co-Founder and CLL Survivor Andrew Schorr was joined by Dr. Jeff Sharman, Director of Research at Willamette Valley Cancer Institute, and Dr. Catherine Callaghan Coombs, Assistant Professor at UNC School of Medicine as they discussed the different CLL treatment options and how to create the best treatment pathway to achieve your health and life goals.

This program is sponsored by AbbVie, Inc. and Genentech, Inc. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content. 

The majority of lung cancer patients have non-small cell lung cancer (NSCLC), and a small percentage of those patients have the RET gene, also called RET fusion-positive lung cancer. What is the RET gene mutation, and how is it treated? We have information that is hot off the research presses on the newest targeted therapies.

During this lung cancer Answers Now program, our host talked to Dr. Viola Zhu from University of California at Irvine and Dr. Karen Reckamp, Director of Medical Oncology at Cedars-Sinai Cancer about the RET gene and new treatment options for patients with metastatic RET fusion-positive NSCLC.

This program is sponsored by Blueprint Medicines. This organization has no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.

Does sex affect the way that people present MPNs? In some ways, yes. Women are more likely to have ET than PV or MF. And while the standard course of treatment can be identical for men and women, there are specific considerations for women.

Listen to a discussion about the cutting-edge research into sex and MPNs and how women can manage their care team in a way that supports their reproductive health whether they're 25 or 65. Our host Ruth Fein talked to Dr. Ellen Ritchie, Assistant Professor of Medicine and a member of the Leukemia Program at the Weill Cornell Medical College of Cornell University and the New York Presbyterian Hospital in New York City.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power in partnership with the MPN Research Foundation. Patient Power is solely responsible for program content.

Talking honestly about one’s medical realities in the doctor’s office takes practice, but it is a crucial step to take. Watch as experts discussed how transparent doctor-patient relationships can improve prostate cancer outcomes.

In the final segment of our prostate cancer Answers Now series, our patient host spoke with Dr. Atish Choudhury, Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Center about the importance of open communication between patients and physicians. What are the best treatment options? What side effects may I experience? What will my quality of life be? Expect all of these answers and more.

This program is sponsored by Bayer. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

Cold and flu season is approaching, and for those with chronic lymphocytic leukemia (CLL), the increased risk of sinus and upper respiratory infections during this time can rightly warrant extra precaution. This year, that is paired with entering flu season during a worldwide pandemic. Listen in as a team of experts shared important tips for staying safe and healthy in the months to come.

Patient Power Co-Founder and CLL Survivor Andrew Schorr will be joined by Co-Host and Patient Advocate Michele Nadeem-Baker as they interview Dr. Stacey Gray, Director, Sinus Center at Massachusetts Eye and Ear, on how to navigate cold and flu season as a CLL patient.

This program is sponsored by AbbVie, Inc. and Genentech, Inc. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

This program is sponsored by Incyte and is produced in partnership with the MPNRF. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

While most myeloproliferative neoplasm (MPN) patients are older adults, children and young adults can be affected as well, and research & treatment for pediatric MPNs is a growing field. Find out what we know and hope to discover about MPNs in children with our host Ruth Fein, patient advocate Portia Pliam, and special guest Dr Nicole Kucine, who specializes in pediatric MPNs as Assistant Professor of Pediatrics at Weill Cornell Medicine.

How do you diagnose MPNs in children and young adults? What treatment options are available? Do they differ from treatments for adults with MPNs? What are the unique challenges of this rare pediatric condition? And finally, what does the future look like for children with MPNs? 

This program is sponsored by Incyte and is produced in partnership with the MPNRF. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

HER2 has been a major part of the breast cancer vocabulary since the 1980s. Nowadays everyone knows their status as a matter of course. But what exactly does that mean? 

Dr. Sara Hurvitz, Director, Breast Cancer Clinical Trial Program at UCLA Medical Center, and patient advocate and writer Andrea Hutton talked about HER2 in depth. Whether you’re positive or negative, this discussion helped clarify what we know about human epidermal growth factor receptor 2 and how emerging research is changing our understanding of these proteins and, in turn, the treatment options for breast cancer patients of all stripes.

This program is supported by an educational grant from Daiichi Sankyo. This organization has no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content.

Immunotherapies have radically changed treatment for non-small cell lung cancer (NSCLC) patients. In fact, the PD-L1/PD-1 blockade is a bona fide breakthrough. What does this fast-moving course of research and treatment mean for lung cancer patients of all persuasions? 

Watch as host and patient advocate Lisa Goldman talked to Dr. David Carbone of the Ohio State University about existing PD-L1/PD-1 treatment options and those currently in development.

In 2018, patients with nonmetastatic castration-resistant prostate cancer (nmCRPC) were watching and waiting. Two years later there are three novel androgen receptor inhibitors available. But more options mean more questions for doctors and for patients. In this first installment of our prostate cancer Answers Now series, we explored these emerging questions around who should use what when, and why. We gave an overview of the disease and current treatment options. Our Patient Power host will talk to Dr. Eleni Efstathiou from MD Anderson Cancer Center in Texas and Dr. Tom Beer, Chair of Prostate Cancer Research at OSHU. 

This program is sponsored by Bayer. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

Host and Patient Advocate Ruth Fein talked to physician-scientist Dr. Ross Levine of the Memorial Sloan Kettering Cancer Center about his research on myeloproliferative neoplasms (MPN) blood cancers.

Dr. Levine’s research focuses on the “somatic mutations in hematologic malignancies using candidate gene, genome-wide, and functional approaches” in MPN. We talked to him, in a way that everybody can understand, about what that means for patients now and for the future of MPN treatment. Also, we talked about the role of “aberrant signal transduction in malignant transformation and in the effects of mutations in epigenetic modifiers.”

This program is sponsored by Incyte and is produced in partnership with the MPNRF. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

One of the backbones of the myeloma treatment regimen is lenalidomide (Revlimid). But what happens when a myeloma patient becomes resistant to this widely used oral drug? 

Host Cindy Chmielewski talked to myeloma expert Dr. Craig Cole of Michigan State University Breslin Cancer Center about treatment options for "life after Revlimid". 

This program is sponsored by Sanofi Genzyme. This organization has no editorial control, and Patient Power is solely responsible for program content.

Having to account for the logistical, emotional, and medical ramifications of COVID-19 is enough to drive anyone batty. For patients who are transfusion or phlebotomy dependent, the burden is even higher.

In this week’s Answers Now: Facing MPNs our intrepid advocate-host Ruth Fein talked to Dr. John Mascarenhas, professor at Icahn School of Medicine and director of the Adult Leukemia Program at Mount Sinai, about life for transfusion or phlebotomy dependent patients.

This program is sponsored by Incyte and is produced in partnership with the MPNRF. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

How can CAR T-cell therapy be used to treat multiple myeloma? Is it getting closer to being an approved treatment option? Watch as host and patient advocate Cindy Chmielewski talked to expert Dr. Sergio Giralt from Memorial Sloan Kettering Cancer Center. 

Remember 2005? It’s the year three 20-somethings founded YouTube and the highest grossing movie featured a child wizard. It’s also the year that the JAK2 V617F mutation was discovered. In the intervening decade and a half, the understanding of that genetic marker, and the discovery of subsequent mutations, has radically changed our understanding of MPNs.

So, you know your markers. What does this mean for your care? Patient and journalist Ruth Fein coveredred translating genomics and prognostic models into everyday practices on this Answers Now: Facing MPNs program.

This program is sponsored by Incyte and is produced in partnership with the MPNRF. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

Having an MPN can be isolating. So can caring for someone with an MPN. Host Esther Schorr – who has been a dedicated care partner for nearly a decade – explored the role that friends and family can play in supporting an MPN patient while continuing to take care of themselves. What role can research, planning, and advocacy play in being a successful source of support? How can care partners build their own support networks so that they can remain supportive in the long term?

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

What treatments are available for estrogen receptor-positive (ER+) breast cancer patients? Are there breast cancer clinical trials that could help? How can patients manage side effects?

 Patient advocate host discussed ER+ treatments with expert Dr. Erika Hamilton from Sarah Cannon Research Institute. They were also joined by a breast cancer patient advocate to discuss their journey.

This program is supported by an educational grant from Daiichi Sankyo. This organization has no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content. 

The tide of new information can be overwhelming. Hosts, Andrew Schorr & Ruth Fein, talked to Dr. Srdan Verstovsek, Professor of Medicine and a hematologist-oncologist at The University of Texas MD Anderson Cancer Center, about recent research leading to new therapies and new understandings of myeloproliferative neoplasms (MPNS) including detailed information about potential new treatments for essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). As a number of clinical trials move through Phase Three, there are new therapies and more FDA approvals are on the horizon. There are many new treatment options to get excited about.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power in partnership with the MPN Research Foundation. Patient Power is solely responsible for program content.

In the immortal words of Tom Petty, “the waiting is the hardest part.” When it comes to MPNs, making decisions around when to start a specific treatment are difficult. 

In this installment of Answers Now: Facing MPNs, patient-advocate host Ruth Fein talked to Dr. Gabriela Hobbs, Clinical Director of Leukemia Service at Mass General, about the pros and cons of watch and wait. Which factors should be included in the process and how should those factors be weighted? Medical history?  Symptoms?  Blood numbers? Timed treatments? We also heard from a patient about her experience.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power in partnership with the MPN Research Foundation. Patient Power is solely responsible for program content.

How do you tell family and friends that you have leukemia? Chronic Lymphocytic Leukemia (CLL) patients often don't "look sick" so it may be hard for your family, friends and co-workers to know what you are going through. How do you help others understand your condition?

Host and CLL patient Michele Nadeem-Baker discussed with social worker Robin Katz from Lurie Cancer Center of Northwestern University communication tips for people living with CLL, and the best way to share details of their condition. 

This is a sponsored program where organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

Rare blood cancers are tricky for doctors to recognize. So how does a patient begin to wrap their head around such a disease? 

In this installment of Facing MPNs Answers Now, Host Ruth Fein, who has had all three types of MPN over the course of 25 years, dove into the three types of myeloproliferative neoplasms: essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). We addressed common questions MPN patients have when they're newly diagnosed and the questions doctors wish people would ask to set themselves up for successful management and self-advocacy over the long term. Watch as our host discussed these issues with Dr. Michael J. Mauro of Memorial Sloan Kettering Cancer Center and Dr. Abdulraheem Yacoub of The University of Kansas Cancer Center.

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

The recent death of Black Panther star Chadwick Boseman from colon cancer shocked the world, including his co-stars and directors. Boseman chose not to disclose his 4 year cancer battle, which included surgeries and chemotherapy. Had his cancer diagnosis and treatments been public, would that have changed his career path? For most of us, whether to share a cancer diagnosis and treatment to our employers is a big decision. What are our legal rights? What happens to our work if we disclose our cancer? What if we choose to keep our health information private?

Dr. Mark Lewis, a practicing Utah oncologist living with cancer, Jill Silverstein, employment and civil rights attorney and Esther Schorr, host and patient advocate, answered questions about cancer and the workplace. 

Is a stem cell transplant right for me? How and when does a stem cell transplant fit into treating myeloma? With all the new advances in myeloma treatments, are stem cell transplants still performed as often?

Host and 3-time stem cell transplant survivor, Jack Aiello sat down with multiple myeloma expert, Dr. Amrita Krishnan from City of Hope to discuss these questions. 

Having a myeloproliferative neoplasm like essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) is anxiety producing enough, now add the stress of COVID-19, and many people find their anxiety is through the roof. Are there ways people can cope with the added stress and find ways to calm down all while still getting the treatment you need?

Host and MPN patient Andrew Schorr discussed these issues with counseling psychologist, Dr. Jim Healy.  He knows the MPN perspective all too well because his wife, Madonna has been living with polycythemia vera (PV) for over 10 years. 

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.