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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.

Increased Infection Risk in MGUS Patients

A short article was just published in the journal Clinical Interventions in Aging that discusses the effectiveness of vaccination of MGUS patients with Prevnar (Pfizer’s 13-valent pneumococcal conjugate vaccine). The article provides some cautions for MGUS patients, such as: ‘Numerous studies have confirmed the association of MGUS with infections, particularly pneumonia, infections caused by viruses [...]

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Earlier Detection of Multiple Myeloma Prevents Bone Damage and Extends Life

Earlier detection of multiple myeloma before bone damage occurs extends lives, according to a Swedish study presented at the 17th International Myeloma Workshop.  In the study, researchers used the Swedish Cancer Register to gather information on 14,013 myeloma patients such as birthdate, myeloma diagnosis date, fractures and death dates. A model was used to estimate [...]

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A Reason Why Myeloma Patients Might Become Resistant to Bortezomib

Israeli researchers identified why multiple myeloma may become resistant to Velcade (bortezomib) by studying the complex signaling that happens in the bone marrow environment. Velcade is a proteasome inhibitor and is a standard treatment for the disease. Velcade is used for induction therapy, in combination therapies and also as maintenance therapy. Although it prolongs survival, [...]

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IMW 2019: MRD and CAR T Cell Updates

The key word is "hope" from the recent IMW 2019 meeting, according to myeloma specialist Mohamad Mohty, MD, PhD, Professor of Hematology and head of the Hematology and Cellular Therapy Department at the Saint-Antoine Hospital at University Pierre & Marie Curie, Paris, France. Dr. Mohty shared two topics he believes stood out at the meeting:  MRD Testing [...]

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Myeloma Crowd Launches a Psoriasis / Multiple Myeloma Study Using Its HealthTree® Platform

As seen on PRNewswire HealthTree IRB-Approved Data Study to Identify Potential Correlations Between Diseases SALT LAKE CITY, Oct. 2, 2019 /PRNewswire/ -- The Myeloma Crowd™, a division of the CrowdCare Foundation, today announced the launch of a new study to identify correlations between psoriasis and multiple myeloma. Psoriasis is an auto-immune disease of the skin and multiple [...]

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IMW 2019: The New GSK Antibody Drug Conjugate in Myeloma

An antibody drug conjugate is a type of immunotherapy being explored in multiple myeloma. Glaxo-Smith Klein is developing a new antibody drug conjugate in myeloma called Belantamab mafodotin (or "belmaf" for short). These drugs use the immune system to find the right myeloma-specific target and then drop a toxic payload in a targeted way. At [...]

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Full Show: The World’s Largest Myeloma Screening Study (PROMISE) with Irene Ghobrial, MD, Dana Farber Cancer Institute

Irene Ghobrial, MD Dana Farber Cancer Institute  Interview Date: September 4, 2019 Thanks to our episode sponsor Summary The PROMISE study is the world's largest screening study for multiple myeloma and is led by top myeloma researchers Dr. Irene Ghobrial of the Dana Farber Cancer Institute and Dr. Ivan Borrello of Johns Hopkins. [...]

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IMW 2019: Getting Vaccinated Following Stem Cell Transplant with Maximillian Merz, MD, Roswell Park Cancer Institute

Are myeloma patients still considered "vaccinated" following a stem cell transplant? Dr. Maximillian Merz joins the Myeloma Crowd at the recent IMW meeting in Boston to share recent findings. It is believed that patients should get vaccinated after transplant, but this is the first time that it has been tested to see if patients responded [...]

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Melflufen in Multiple Myeloma Therapy – IMW 2019

Melflufen is an anti-myeloma drug by Octopeptides AB given by IV infusion that is currently in clinical trials. Dr. Paul Richardson of the Dana Farber Cancer Institute shared an update on the HORIZON study results at the recent International Myeloma Workshop (IMW) conference in Boston. Melflufen is a new IV therapy currently in clinical trials [...]

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Our Next Show: Cellectar Biosciences’ New Radiosensitive Therapy in Multiple Myeloma with Natalie Callander, MD University of Wisconsin, Monday, Sept 30 @ 10 am Central

Monday, September 30, 2019 @ 8 am Pacific, 9 am Mountain, 10 am Central, 11 am Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer Cellectar Biosciences is working on testing a radiosensitive therapy in blood cancers including multiple myeloma. Their product, CLR 131, targets the myeloma tumors by [...]

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IMW 2019: A Vaccine to Extend Myeloma Remissions with Syed Abbas Ali, MD

When should myeloma vaccines be used for patients? Dr. Syed Abbas Ali, MD of Johns Hopkins Medicine tells us that it's usually when there is a low tumor burden, like after stem cell transplant or when patients are on maintenance and their myeloma is under control.  Dr. Ali shares his Phase II study of a [...]

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IMW 2019: Amrita Krishnan, MD on the Best Myeloma Maintenance Approach After Transplant

What is the best approach for maintenance therapy? How long should patients be on maintenance? Can I stop treatment if I'm minimal residual disease (MRD) negative? These important questions need to be answered if maintenance therapy is going to be applied properly for myeloma patients. Amrita Krishnan, MD, Director of the City of Hope multiple [...]

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Carfilzomib and Daratumumab Combination Proves Utility in CANDOR Study for Relapsed Myeloma Patients

Two relatively newer therapies (carfilzomib and daratumumab) have now been combined with dexamethasone in the Phase III CANDOR study and showed a 37% reduction in the risk of myeloma progression or death for relapsed or refractory myeloma patients treated with the triplet combination. The CANDOR study evaluated 466 relapsed or refractory myeloma patients who had [...]

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Myeloma Crowd Radio: Creating A New Myeloma Center of Excellence in Austin, Texas with William Matsui, MD

William Matsui, MD Dell Medical School LIVESTRONG Cancer Institutes  Interview Date: August 20, 2019 Thanks to our episode sponsor Summary Creating a new multiple myeloma center from scratch is a challenge, but one that Dr. William Matsui has successfully accomplished with the new myeloma center at the Austin, Texas Dell Medical School LIVESTRONG [...]

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3rd Annual Medical College of Wisconsin Multiple Myeloma Symposium, Saturday, September 28th

Register Today On Saturday, September 28, 2019, the Medical College of Wisconsin is hosting its 3rd annual Multiple Myeloma Patient and Caregiver Symposium. The event will be held from 7:00 am - 2:30 pm Central time.  Keynote and Featured speakers are Dr. Rafael Fonseca, Chair of the Department of Internal Medicine and Professor of [...]

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What Cells Keep Myeloma Growing? Myeloma Researchers Find a Target

Today's myeloma therapy can effectively kill myeloma in many patients and even make them minimal residual disease negative. But then years later, it can grow back. How is this possible? University of Iowa researchers and colleagues are working to identify which cells are "tumor-initiating" or cause myeloma to grow. In a recent paper, the researchers [...]

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Can A Second Type of BCMA Multiple Myeloma Therapy Be Used After the First Fails?

B-cell maturation agent (BCMA) is now a popular target in myeloma treatment and is being investigated in CAR T cell therapy, bispecific antibodies and antibody drug conjugates. Each of these types of immunotherapies use different mechanisms to target the BCMA found on myeloma cells.  Researchers are learning that even when BCMA expression is lowered over [...]

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Our Next Show: An Update on the World’s Largest Myeloma Screening Study with Irene Ghobrial, MD, Dana Farber Cancer Institute, Wednesday, Sept 4 @ 1 pm Eastern

Wednesday, September 4, 2019 @ 10 am Pacific, 11 am Mountain, Noon Central, 1 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer Irene Ghobrial, MD of the Dana Farber Cancer Institute and Ivan Borrello, MD of Johns Hopkins are leading the largest study on precursor myeloma conditions [...]

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Our Next Show: Creating a New Multiple Myeloma Research Center from Scratch with William Matsui, MD, Dell Medical School LIVESTRONG Cancer Institutes

Tuesday, August 20 @ 11 am Pacific, Noon Mountain, 1:00 pm Central, 2:00 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer. Why are myeloma specialists and researchers so important? What does it take to create a new myeloma research center from scratch? William Matsui, MD recently left [...]

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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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