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Jenny A

About Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

Full Show: Using Selinexor in Today’s Myeloma Clinic with Paul Richardson, MD, Dana Farber Cancer Institute

Paul Richardson, MD Dana Farber Cancer Institute  Interview Date: July 31, 2019 Thanks to our episode sponsor Summary Selinexor, by Karyopharm, was recently approved in the myeloma clinic for use in myeloma patients who have relapsed after other lines of standard myeloma treatment. Learn why selinexor was approved early, when it should be [...]

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The Importance of Light Chain Levels for Multiple Myeloma Patients

One of the key myeloma markers doctors and patients track in myeloma are light chain levels. What are light chains? An important part of our immune systems are our immunoglobulins - disease fighting immune cells. Each of these immunoglobulins have a light chain (like kappa or lambda) and a heavy chain (like IgG, IgA, IgM, [...]

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Myeloma Patients, Partnership and Education

By Bonnie Falbo As the wife of a myeloma patient, and as a new Myeloma Coach for the Myeloma Crowd, I was honored to attend the Inaugural Charlotte Plasma Cell Disorder Congress, hosted by Levine Cancer Institute on August 9-11, 2019. Intended primarily for local health care providers who treat myeloma patients, Myeloma Coaches and [...]

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Your Gut Bacteria and Responses to Multiple Myeloma Treatment

Levels of remaining myeloma cells after therapy may be linked to your gut bacteria, according to researchers from the Memorial Sloan Kettering Cancer Center.  Significant research has been done in myeloma linking lower levels of disease after the first line of treatment with long-term outcomes. Newer, more sensitive testing is called Minimal Residual Disease testing [...]

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Medicare and Medicaid Increases CAR T Coverage for Multiple Myeloma Treatment

CAR T therapy is an emerging treatment for multiple myeloma and over 70% of myeloma patients are on Medicare or Medicaid. CAR T treatments are usually a single-dose administration and are expected to be expensive. Last Friday, the the Centers for Medicare and Medicaid Services (CMS) announced it will increase the amount institutions are reimbursed [...]

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Our Next Show: Using Selinexor in the Multiple Myeloma Clinic with Paul Richardson, MD, Dana Farber Cancer Institute, Wednesday, July 31 @ 10 am Eastern

Wednesday, July 31 @ 7:00 am Pacific, 8:00 am Mountain, 9:00 am Central, 10 am Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. A new treatment called Selinexor by Karyopharm was recently approved for highly relapsed multiple myeloma patients. Learn how experts like Dr. Paul Richardson of the [...]

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First Myeloma Patient Receives New Bi-Specific Antibody (BiTE) by Teneobio and Abbvie

Bi-specific antibodies are new class of myeloma drug where an immune system T cell (targeting CD3) is joined with a target on myeloma cells (BCMA) to enable the T cell to kill the myeloma cells. Teneobio and Abbvie are teaming up to develop a new CD3/BCMA bi-specific antibody to kill myeloma cells with minimal cytokine [...]

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FDA Accepts Application for New Engineered Toxin Body Drug by Takeda Oncology and Molecular Templates

Molecular Templates and Takeda Oncology are teaming up to develop a new class of targeted biologic therapeutics for myeloma patients. The FDA has now accepted the application for TAK-169, an Engineered Toxin Body (EBT) targeting CD38. Together, they plan to conduce a Phase I trial for relapsed/refractory myeloma patients.  According to Eric Pooma, PhD, CEO [...]

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An On/Off Switch for CAR T Cell Therapies in Multiple Myeloma

University of Würzburg myeloma researchers have identified that a tyrosine kinase inhibitor called dasatinib can act as an on/off switch for CAR T cells without affecting the T cells' viability.  Significant CAR T cell therapy is in development for multiple myeloma in over a dozen clinical trials. The most common target in development for multiple [...]

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HealthTree® Patient Portal Surpasses 4,200 Users Representing 4% of All Multiple Myeloma Patients in the U.S

Online Patient Platform Providing Treatment Options and a Path to a Myeloma Cure SALT LAKE CITY- July 11, 2019 /PRNewswire/ -- HealthTree®, the first and only online portal for multiple myeloma cancer patients to find their best treatment options and help accelerate a cure, today announced it has reached more than 4,200 patient users on its [...]

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Selinexor (Xpovio) Receives FDA Approval for Highly Relapsed/Refractory Multiple Myeloma

Today, the U.S. Food and Drug Administration granted accelerated approval to Xpovio (selinexor) tablets in combination with the steroid dexamethasone for the treatment of adult patients with relapsed refractory multiple myeloma (RRMM) who have received at least four prior therapies and whose disease is resistant to several other forms of treatment, including at least two [...]

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Daratumumab Now FDA Approved for Newly Diagnosed Transplant-Ineligible Myeloma Patients

Daratumumab is now FDA approved in combination with lenalidomide and dexamethasone for newly diagnosed myeloma patients who are not eligible to receive a stem cell transplant. Daratumumab was approved in the fall of 2015 and has been a very effective addition to the myeloma drug arsenal for patients. It was formerly approved for use after [...]

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Deer Valley Dinner with Stars – Friday, July 19 – Global Myeloma Experts Dr. Rafael Fonseca and Dr. Gareth Morgan and Standup Comedian Alex Velluto

Purchase Tickets   Join us at the Deer Valley Resort on July 19 for a spectacular summer evening with the stars including two global myeloma experts, a gourmet dinner and an evening of comedy with nationally recognized comedian Alex Velluto.  This event is held in conjunction with our Myeloma Coach Deer Valley Summit.  Lodges [...]

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Full Show: Myeloma Immunotherapy in Review with Alexander Leshokin, MD, Memorial Sloan Kettering Cancer Center

Alexander Lesokhin, MD Memorial Sloan Kettering Cancer Center Interview Date: May 24, 2019 Thanks to our episode sponsor Summary Immunotherapy is becoming the hottest topic in myeloma treatment. But immunotherapy can mean many different things. Learn more in this overview show with immunotherapy expert Dr. Alexander Lesokhin of Memorial Sloan Kettering as he [...]

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FDA Lifts Hold on CANOVA Venetoclax Trial in Myeloma

The FDA has now lifted the partial hold on the Phase III CANOVA multiple myeloma trial using venetoclax with pomalidomide and dexamethasone. Venetoclax is a BCL-2 inhibitor that is being jointly developed between AbbVie and Roche. The hold was lifted after additional risk mitigation procedures and the implementation of new guidelines.  Certain myeloma venetoclax studies [...]

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Bike the Coast Day 5: Riding the Ups and Downs of Myeloma

Donate to Richard's Ride   The world for multiple myeloma patients is one of ups and downs. How can we ride successfully through all its hills and valleys? Myeloma patient Richard Hite shares how he is riding well with myeloma as he rides the first Bike the Coast 600 mile ride from San Francisco [...]

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Bike the Coast Day 4: Riding with SAG (Support and Gear) in Myeloma Means Getting the Best Myeloma Education

Donate to Richard's Ride   Richard Hite has ridden 400 miles of his 600 mile ride down the California coast.  What if he left his bike pump or spare tire at home? Or left without a map for his route? Without Support and Gear (SAG), his ride would be destined for failure from the [...]

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Early Indications of Potential Heart Conditions Using Carfilzomib in Multiple Myeloma

Carfilzomib is a next generation proteasome inhibitor that is being regularly used in the myeloma clinic. It is now being used frequently as part of induction therapy and is favored for patients with high risk myeloma. One side effect in approximately 4% of myeloma patients can include heart issues. A recent Japanese study published in [...]

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Bike the Coast Day 2: Ride with the Right Fit for Your Myeloma

Today is Day 2 of Bike the Coast - an epic 600 mile ride from San Francisco to San Diego by myeloma patient Richard Hite and his team. Please support Richard's Ride!  Donate to Richard's Ride   Avid cyclist Richard Hite wouldn't think about renting a bike and riding it 600 miles. If a [...]

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ASCO 2019: Venetoclax Updates with Mike Thompson, MD, PhD, Advocate Aurora Health

Venetoclax is the first drug that was determined to work for a specific type of genetic feature found in multiple myeloma patients called the 11;14 translocation. This means that part of chromosome 11 has swapped places with parts of chromosome 14 on the myeloma cells. This is the most common translocation found in myeloma patients [...]

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ASCO 2019: Updates on Selinexor with Paul Richardson, MD, Dana Farber Cancer Institute

Selinexor is a drug that is being evaluated for early approval in multiple myeloma for highly relapsed or refractory patients. Dr. Paul Richardson joined the Myeloma Crowd at ASCO to share recent updates on their progress.   Patients in the study had myeloma that was resistant to immunomodulatory agents, proteasome inhibitors, and anti-CD38 monoclonal antibodies (also [...]

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ASCO 2019: Wearables and Fitness in Myeloma with Jens Hillengass, Roswell Park

Myeloma patients are living longer than ever and ask their myeloma docs regularly about how they can improve their general health, risk situation and overall outcomes. Many patients use "wearables" like Fitibits or Apple watches that can track your steps, sleep, weight and heart rate.  Myeloma patients may have bone disease, which makes it potentially [...]

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ASCO 2019: Subcutaneous Daratumumab Updates with Saad Usmani, MD, Levine Cancer Institute

Saad Usmani, MD of the Levine Cancer Institute shared results from the recent ASCO 2019 conference about the use of subcutaneous daratumumab, or dara given as a shot under the skin (usually in the stomach). Today, the first infusion of IV daratumumab is given over a multi-hour period and sometimes has to be administered over [...]

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Full Show: Considerations of Cost in Myeloma Care with Rafael Fonseca, MD of the Mayo Clinic, Scottsdale

Rafael Fonseca, MD Mayo Clinic Scottsdale Interview Date: May 22, 2019 Thanks to our episode sponsor Summary The cost of healthcare is on the minds of every stakeholder including patients, provider and payers, especially when it comes to cancer treatment. Dr. Rafael Fonseca joins Myeloma Crowd Radio to share his insights about the [...]

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ASCO 2019: Isatuximab Updates with Dr. Paul Richardson

Isatuximab is a new monoclonal antibody targeting CD38 that has been progressing through clinical trials in order to receive FDA approval. Dr. Paul Richardson joined the Myeloma Crowd at the recent ASCO 2019 conference to share the presented results from the Phase III  ICARIA-MM trial.   According to Dr. Richardson, although this new drug targets [...]

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ASCO 2019: New Bi-Specific Antibody Called AMG-420 In Development

AMG0-420 is a new bi-specific antibody that is being tested in Phase I clinical trials. It is a small molecule that binds CD3 on T cells with a common target found on all myeloma cells called BCMA. By binding the two together, the T cell is forced to kill the myeloma cell.  While CAR T [...]

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ASCO 2019: A New Cereblon Inhibitor for Multiple Myeloma

For many years, researchers didn't know how the immunomodulator (IMiD) drugs like lenalidomide and pomalidomide worked to impact myeloma. In the last 10 years, it has become more clear that the intracellular molecule called celebron is part of the reason the IMiD drugs are effective. At the recent ASCO 2019 meeting, Sagar Lonial, MD of [...]

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ASCO 2019: New Updates in Smoldering Myeloma

The treatment of smoldering myeloma is advancing based on what myeloma researchers are learning in recent studies. One of the most important points discussed at the recent ASCO conference were how to better risk stratify smoldering myeloma patients.   Dr. Natalie Callander from the University of Wisconsin shared a study from smoldering myeloma patients that began [...]

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Blood Cancer Patients at Greater Risk for Head and Neck Cancers

Patients with blood cancers are at a higher risk of developing head and neck cancers, according to results of a retrospective study published in JAMA Otolaryngology – Head & Neck Surgery. Having a prior blood cancer was also associated with worse 2 and 5-year overall survival for these head and neck cancers.    The study [...]

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New Proteasome Inhibitor to Treat Multiple Myeloma

University of Kentucky (UK) researchers have discovered a new compound that targets the active site of proteasomes. Proteasomes are the garbage processor of cells, breaking down old proteins into smaller peptides so they can be re-used in the creation of new proteins. In multiple myeloma, several proteasome inhibitors have been developed to treat multiple myeloma [...]

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Our Next Show: Immunotherapy in Multiple Myeloma with Alexander Lesokhin, MD, Memorial Sloan Kettering Cancer Center, Friday, May 24 @ 11:30 Eastern

Friday, May 24, 2019 @ 8:30 am Pacific, 9:30 am Mountain, 10:30 am Central, 11:30 am Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. Immunotherapy is a major class of therapy that continues to expand in the myeloma clinic. Dr. Alexander Lesokhin of Memorial Sloan Kettering Cancer Center [...]

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Clinical Trials: CD38 Targeted CAR T Now Open in Phase I Multiple Myeloma Study

Different targets are being used in myeloma for CAR T therapy and researchers have not yet identified the optimal target for each myeloma patient. The first target to begin CAR T development was BCMA, and now additional targets are being explored.  Myeloma patients have CD38 markers and it may be a potential target for CAR [...]

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Our Next Show: STEP Therapy and Costs in Myeloma Care with Rafael Fonseca, MD, Mayo Clinic Scottsdale on Monday, May 20 @ 3:30 pm Central Multiple Myeloma

Monday, May 20, 2019 @ 1:30 pm Pacific, 2:30 pm Mountain, 3:30 pm Central, 4:30 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. STEP therapy is an approach in managed medical care to minimize costs of prescription drugs. The program allows patients to begin therapy with the [...]

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Full Show: Off-the Shelf CAR T Cell Therapy Targeting CS1 by Cellectis with David Siegel, MD, PhD, Hackensack University

David Siegel, MD, PhD John Theurer Cancer Center / Hackensack University Interview Date: May 3, 2019 Thanks to our episode sponsor Summary CAR T cell therapy is making its way into the myeloma clinic. Most of of the early CAR T therapies have been personalized for each patient using a target of BCMA. [...]

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One Patient’s Multiple Myeloma CAR T Story: Bob Regello

Bob Regello has had multiple myeloma since 2007 and for the past 6 years has been a support group leader in Sacramento, California with his wife Jeanne for the past 6 years. We had the pleasure of sharing HealthTree in their support group meeting last fall and enjoyed their positive, caring spirits and saw their [...]

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How to Make a Better CAR T Cell Therapy in Multiple Myeloma: Sleeping Beauty

There is hope and promise around CAR T cell therapy for multiple myeloma patients. At the same time that the first early CAR T trials are beginning to publish data results, new methods of manufacturing are being developed to make CAR T therapy more effective, easier to produce and less expensive. Some CAR T companies [...]

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BB2121 CAR T Results Described in New England Journal of Medicine

Last week the New England Journal of Medicine published results from the Phase I Celgene bb2121 CAR T clinical trial.  In the Phase I study, 33 patients with relapsed or refractory myeloma were giving bb2121 as a single infusion of the CAR T product at different doses in the dose escalation phase (50×106, 150×106, 450×106, [...]

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New Discovery in the Prevention of Kidney Disease in Multiple Myeloma Patients

University of Alabama at Birmingham researchers have discovered a way to prevent kidney failure in multiple myeloma patients.  Paul Sanders, MD, a nephrologist at UAB found that kidney damage can be prevented by blocking a pathway activated in the kidney by light chain proteins produced by the myeloma cells.  The study was published in the [...]

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Just Breathe: Sleep Apnea and Multiple Myeloma and the Role of Oxygen Therapy after Transplant

Multiple myeloma patients may want to adopt a new mantra: just breathe. University of Iowa researchers have found a link to sleep apnea and multiple myeloma. In Iowa, myeloma is in the top 10 deadliest cancers for women. The story was featured on local TV channel KCRG. Patients who have sleep apnea stop breathing at [...]

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New in HealthTree: Better Clinical Trial Matching for Multiple Myeloma Patients

In HealthTree, our partnership with SparkCures allows you to see a customized list of clinical trials. Now that list is even better and more personal. We made recent HealthTree updates that allow your current lab values and your genetic features to be passed to SparkCures to further narrow your list of treatment options. Why is this [...]

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Our Next Show: New Off-the-Shelf CAR T for Multiple Myeloma Targeting CS1 by Cellectis, with David Siegel, MD, John Theurer Cancer Center, Friday, May 3 @ 3:30 pm Eastern

Friday, May 3, 2018 @ 12:30 pm Pacific, 1:30 pm Mountain, 2:30 pm Central, 3:30 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. CAR T therapy is becoming a hot area of early clinical trials for multiple myeloma patients, but most are personally customized for each patient. [...]

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Full Show: Melphalan and High Dose IV Vitamin C for Multiple Myeloma with Yogesh Jethava, MD, University of Iowa

Yogesh Jethava, MD University of Iowa, Holden Cancer Center  Interview Date: April 18, 2019 Thanks to our episode sponsor Summary Most myeloma patients are familiar with how the chemotherapy melphalan is used during stem cell transplant. It is typically used in high doses and remains the single most effective drug to kill myeloma, [...]

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Ride with Richard: His Inspiring Myeloma Bike the Coast Ride this June

Register for Bike the Coast 2019   Richard Hite is a business owner, father of three kids, outdoor enthusiast, and survivor or Multiple Myeloma as of April 2015. As founder of the Myeloma Crowd Cycling group, Richard is leading the team in the inaugural Bike the Coast event this June.  Richard’s Story: Richard has [...]

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Medicare Coverage – Is It Enough for Multiple Myeloma CAR T Therapies?

Medicare covers many cancer treatments, but is the coverage enough in the age of new immunotherapies like CAR T? This topic was addressed in a recent New York Times article where Medicare is trying to balance newer treatments with cost.   According to the article:  Cancer patients, doctors and drug companies are urging the Trump administration [...]

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Our Next Show: Multiple Myeloma Intravenous Vitamin C and Melphalan Study with Yogesh Jethava, MD, University of Iowa, Thursday, April 18 @ 2 pm Central

Thursday, April 18, 2019 @ Noon Pacific, 1 pm Mountain, 2 pm Central, 3 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. A new clinical trial is open combining low dose melphalan, a drug commonly used at high doses for stem cell transplant, and high dose intravenous [...]

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Kappa or Lambda Myeloma Testing. Is there a Difference?

Every myeloma patient has immunoglobulin tests run to watch their kappa, lambda and kappa/lambda ratio numbers. It's one of the most important labs to watch if you are a myeloma patient. Immunoglobulins are antibodies that fight infection. In myeloma, one of these antibodies grows out of control. The Y shaped antibodies have both a heavy [...]

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New Target for CAR T Therapy in Multiple Myeloma: GPRC5D

While many CAR T treatments are being developed for a target called B-cell maturation antigen (BCMA), relapse still occurs in many patients. As the BCMA trials move up to earlier stages of disease, outcomes may be improve but newer targets are being explored. Memorial Sloan Kettering Cancer Center researchers are working to develop a CAR [...]

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Blood Changes After Pesticide Exposure in Multiple Myeloma

Recent findings of male participants in the Agricultural Health Study showed that certain blood levels can change after someone has been exposed to the pesticide permethrin and that those changes can persist for at least 3 weeks. The study was shared at the AACR conference (American Association for Cancer Research) happening in Atlanta this week.  [...]

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