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.

Stem Cell Transplant Still Improves Myeloma Patient Survival

With the advent of new drugs for the treatment of multiple myeloma, the role of stem cell transplant is frequently questioned. A recent study by researchers at UC Davis, published in the Journal of the National Cancer Institute, showed that autologous stem cell transplant improves survival for multiple myeloma patients. Interestingly, many patients who would qualify [...]

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EHA: INSIGHT Update on Multiple Myeloma

The European Hematology Association is hosting its conference in Stockholm, Sweden this week, so watch for updates from on the Myeloma Crowd site.  One update is being presented from Takeda Oncology on their INSIGHT study to better understand how myeloma treatments are being administered in the clinic. There is no standard therapy in the management [...]

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Full Show: Overcoming Proteasome Inhibitor Resistance, Muhamed Baljevic, MD, University of Nebraska

Thanks to our episode sponsor, Celgene Corporation Muhamed Baljevic, MD University of Nebraska Interview Date: May 28, 2018     Many patients' myeloma can become resistant to an important class of drugs use for myeloma care - proteasome inhibitors. Most patients (70%) will respond to these drugs as single therapies but some patients [...]

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ASCO: Daratumumab/Carfilzomib/Dex Combo Effective in Lenalidomide Relapsed or Refractory Multiple Myeloma

At the recent American Society of Clinical Oncology (ASCO) conference, Ajai Chari, MD of the the Mount Sinai School of Medicine presented results showing that daratumumab plus carfilzomib and dexamethasone (Dara-Kd) had promising effect and was generally well tolerated for patients who were refractory to lenalidomide.    Becoming refractory to lenalidomide can be common for [...]

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Daratumumab with PD-1 Inhibitor Study Discontinued for Multiple Myeloma

Genmab announced that based on a planned review by the Data Monitoring Committee (DMC), two studies using daratumumab in combination with PD-1 inhibitors will be discontinued. The studies include daratumumab with atezolizumab for non-small cell lung cancer and daratumumab with JNJ-6372383 in multiple myeloma. The DMC determined that there was no observed benefit in the [...]

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Our Next Show: Overcoming Proteasome Inhibitor Resistance Using a New Drug with Muhamed Baljevic, MD, University of Nebraska, Monday, May 28 @ 2 pm Central

Monday, May 28, 2018 @ 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 Many multiple myeloma patients can become resistant to an important class of myeloma drugs called proteasome inhibitors. Researchers found that expression of MUC20 could help [...]

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Full Show: Introducing HealthTree for Multiple Myeloma Patients with Rafael Fonseca, MD, Mayo Clinic Scottsdale

Rafael Fonseca, MD Mayo Clinic Scottsdale Interview Date: May 18, 2018 Thanks to our episode sponsor, Takeda Oncology Summary Dr. Rafael Fonseca joins Myeloma Crowd Radio to share a new tool for myeloma patients called HealthTree. HealthTree can help myeloma patients find and understand personally relevant treatment options that can then be taken [...]

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Clinical Trial: BOSTON Trial, Bortezomib, Selinexor, and Dexamethasone in Patients With Multiple Myeloma

The BOSTON trial is a phase 3 study comparing weekly oral selinexor + bortezomib + low-dose dexamethasone (SVd) versus bortezomib (twice weekly) + low-dose dexamethasone (Vd) in patients with relapsed or refractory multiple myeloma. Patients whose myeloma progresses on the Vd arm may be eligible to “cross over” onto the SVd arm. Selinexor is the first in [...]

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Our Next Show: Introducing HealthTree with Rafael Fonseca, MD, Mayo Clinic Scottsdale, Friday, May 18 @ 2 pm Pacific

Friday, May 18, 2018 @ 2 pm Pacific, 3 pm Mountain, 4 pm Central, 5 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer A new tool called HealthTree for multiple myeloma patients is coming in June! HealthTree is a tool to help myeloma patients improve their [...]

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Understanding the Mutations that Cause Multiple Myeloma May Help Drive Personalized Treatment

 Affordable whole genome sequencing has helped researchers from the United Kingdom identify the mutations that drive the development of multiple myeloma and link that to potential opportunities to personalize treatment.   In a recent study by Richard Houlston, MD, PhD, Professor of Molecular and Population Genetics at The Institute of Cancer Research, London, new genes were identified [...]

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First Frontline Daratumumab Use Approved

Genmab A/S announced today that the US FDA approved the use of daratumumab (Darzalex) in combination with bortezomib, melphanal and prednisone (VMP) for newly diagnosed patients who are not eligible for a stem cell transplant. The license was submitted by Janssen Biotech, Inc.  in November 2017. Janssen has an exclusive worldwide license to develop, [...]

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Clinical Trials: What are Bispecific Antibodies?

Immunotherapy is a method of treating cancer that uses the body’s immune system to fight the cancer cells. A bispecific antibody is a type of immunotherapy being tested for use in the treatment of Multiple Myeloma. It differs from traditional monoclonal antibodies in that it is engineered to simultaneously target and bind to two different [...]

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Full Show: First Risk-Adapted Therapy Trial for Newly Diagnosed Patients (the MASTER trial) with Luciano Costa, MD, PhD, UAB

Luciano Costa, MD, PhD University of Alabama at Birmingham Interview Date: April 16, 2018 Thanks to our episode sponsor, Celgene Corporation. Summary Myeloma researchers are learning that the deeper our remissions, the better our outcomes (overall). Dr. Costa joins Myeloma Crowd Radio to share a key study for newly diagnosed multiple myeloma [...]

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Clinical Trial: BCMA CAR-T Plus LY3039478 Inhibitor in Multiple Myeloma

The use of CAR-T cell therapy is expanding in the treatment of multiple myeloma. Currently, several centers are producing their own CAR-T cell products. This clinical trial is open at the Fred Hutchinson Cancer Center. This phase I trial determines the side effects and best dose of B-cell maturation antigen (BCMA)-chimeric antigen receptor (CAR) [...]

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Selinexor Gets FDA Fast-Track Status for Penta-Refractory Myeloma Patients

Karyopharm Therapeutics recently announced that their oral drug selinexor (Selective Inhibitor of Nuclear Export) is obtaining FDA fast-track status for myeloma patients who have received three prior lines of therapy. Those three lines must have included five different drug classes: Chemotherapy like melphalan or cyclophosphamide A proteasome inhibitor like bortezomib or carfilzomib An immunomodulator [...]

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Making Myeloma Drugs More Targeted and Effective Using Actinium Warhead Enabling (AWE) Technology

At the recent American Association for Cancer Research (AACR) annual meeting in Chicago, Actinium Pharmaceuticals showed data on a new technology that helps more specifically deliver myeloma drugs to tumor cells using a radioactive isotope.The company teamed up with Astellas Pharma, Inc. who tested regular daratumumab vs. daratumumab combined with a radioisotope Actinium-225. At the [...]

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Myeloma 101: FISH Testing in Myeloma

FISH testing (fluorescence in situ hybridization) is a way of testing myeloma genetics in individual patients. It uses special fluorescent dyes that only attach to specific parts of chromosomes. FISH can find most chromosome changes (such as deletions or translocations) that can be seen under a microscope in standard cytogenetic tests, as well as [...]

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Our Next Show: Quad Treatment with Transplant for Newly Diagnosed Myeloma with Luciano Costa, MD, PhD University of Alabama

Monday, April 16, 2018 @ 10 am Pacific, 11 am Mountain, Noon Central, 1:00 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer Adequate treatment of multiple myeloma at diagnosis is a key issue for patients because their first remission is typically the longest and most durable. Dr. [...]

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Clinical Trial: New Takeda CD-38 Monoclonal Antibody (Subcutaneous) For Relapsed/Refractory Myeloma

A Phase I and IIa study is open to test the safety and impact on myeloma for a new monoclonal antibody targeting CD-38. The antibody will be given subcutaneously as a single agent. The drug being tested in this study is called TAK-079. TAK-079 is being tested to treat people who have relapsed/refractory multiple [...]

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Researchers Suggest Increased Screening of MGUS Patients to Prevent Multiple Myeloma

Should we be screening the general population to learn more about how to prevent multiple myeloma? Myeloma researchers say YES in a recent article published in the Journal of Clinical Oncology  Study authors were looking to understand how to best screen for MGUS: When should the screening start? How often should people be screened? Which [...]

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Lenalidomide Every Other Day for Myeloma Patients with Kidney Concerns?

Kidney issues are a common complication for multiple myeloma patients. It can be present in up to 30-35% of newly diagnosed myeloma and is related to a poor outcome. However, early recognition and early treatments can overcome the negative impact of renal impairment and even reverse kidney damage in most cases. The immunomodulator lenalidomide is [...]

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How To Reduce Infections During Myeloma Stem Cell Transplant

Supportive care during stem cell transplant typically includes the use of strong antibiotics like ciprofloxacin or levofloxacin. Researchers performed a study reported in Supportive Cancer Care  to see whether the addition to doxycycline to ciprofloxacin would be beneficial for myeloma patients. In the study, researchers reviewed electronic medical records and their stem cell transplant [...]

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Full Show: NAM-Natural Killer Cells with Elotuzumab by Viktoria Bachanova, MD, PhD, University of Minnesota

Thanks to our episode sponsor, Celgene Corporation. Viktoria Bachanova, MD, PhD University of Minnesota Interview Date: March 12, 2018 Summary Natural killer cells are the body's way of eliminating cancerous cells. When a myeloma patient's immune system is too weak, the natural killer cells can't effectively do their job to eliminate myeloma. A [...]

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Clinical Trials: Isatuximab in Relapsed and Refractory Myeloma

A new CD-38 monoclonal antibody called Isatuximab (formerly known as SAR650984) is currently in Phase III clinical trials for relapsed and refractory myeloma patients. In earlier phases of isatuximab development,  "Researchers observed impressive response rates specifically among higher-risk patients who were aged older, had poor renal function and high-risk cytogenetics." Two Phase III clinical [...]

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How Do I Exercise with Myeloma If I Am Elderly or Frail?

Having myeloma and corresponding treatment can weaken the body and your ability to exercise.  Difficulty with daily activities could range from rising up from a chair to flexing the hip enough to reach a step, especially for patients who have bone damage, feel frail or are elderly. Treatment can also cause patients’ strength to decrease, due [...]

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New Drug Targeting WT1 Found to Be Effective as Post-Transplant Myeloma Therapy for High-Risk Patients

Treating high-risk multiple myeloma is a challenge and new drugs are being developed to address the needs of this patient population. Progress on a new drug called galinpepimut-S (GPS), which targets the WT1 pathway was recently shared at the 44th Annual European Society for Blood and Marrow Transplantation (EBMT) Meeting. Stem cell transplant is typically suggested [...]

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Molecule (IL-18) Helps Myeloma Hide from the Immune System and Predicts Worse Survival

Inflammation that promotes tumor growth and the ability to hide from the immune system are hallmarks of all cancers. A recent multiple myeloma study published in Cancer Cell showed that a molecule called IL-18 suppressed the immune system, creating a bone marrow microenvironment that encouraged myeloma growth. The study was performed in 152 myeloma [...]

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Clinical Trial: Four Drug Induction Before Transplant Using Monoclonal Antibody for Newly Diagnosed Myeloma

Myeloma experts are learning more about the power of the CD-38 targeted monoclonal antibodies and are now testing them in the newly diagnosed setting. They are also working to use quad therapies (four drug combinations) to see if more powerful treatment up front results in longer remissions and better overall survival. This trial, called [...]

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Increased Distress Could Influence Negative Outcomes for Myeloma Patients

Being a cancer patient is no easy task. Whether it's financial issues, psychological burdens, or new side effects to treatment, these stress-induced factors can cause patients to go into distress - which isn't helpful for treatment. Myeloma specialist, Joshua R. Richter, MD at the John Theurer Cancer Center, recognized this distress, and conducted a study [...]

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Patient Power: Is Sugar Part of a Myeloma-Friendly Diet?

What is the truth regarding sugar intake as a myeloma patient? Is it okay? Should it be limited? Or, should it be completely avoided? Myeloma experts Tiffany Richards and Dr. Robert Orlowski from The University of Texas MD Anderson Cancer Center discuss what dietary changes are recommended to live well with a myeloma condition and how [...]

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Our Next Show: NAM-NK Cells and Elotuzumab with Veronika Bachanova, MD, PhD, Monday, March 12 @ 2:30 Central

Monday, March 12, 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 Natural killer cells are the body's way of eliminating cancerous cells. When a myeloma patient's immune system is too weak, the natural killer cells [...]

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Full Show: Allogeneic Transplant and Precursor Myeloma Cells with William Matsui, MD, Johns Hopkins

Thanks to our episode sponsor, Takeda Oncology Dr. William Matsui, MD Johns Hopkins University Interview Date: February 16, 2018 Summary Allogeneic (or donor) stem cell transplant has become much safer over the last 20 years. For those who have high risk myeloma features, it should be considered as a potential option. Dr. [...]

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Spotlight on Myeloma: Multiple Myeloma Awareness Month

Amgen Oncology lit up the Southern California sky on Myeloma on Monday, March 5 in honor of Multiple Myeloma Awareness month. The event launched their Spotlight on Myeloma for 2018 with a walk and keynote speaker myeloma patient Brian Hedford sharing his experience as a myeloma patient. Amgen generously donated $25,000 to each myeloma foundation [...]

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Clinical Trial: Study of of new BET Inhibitor Alone or In Combination for Advanced Multiple Myeloma

A new inhibtor (BET - Bromodomain and Extra-Terminal) is being tested in multiple myeloma. The BET proteins interact with acetylated histones. This interaction disrupts genetic expression on cells, potentially creating a genetic disruption that causes myeloma. Prevention of the expression of certain growth-promoting genes may lead to an inhibition of tumor cell growth. This inhibitor is [...]

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Why I’m a Myeloma Advocate, by Jenny Ahlstrom

Our family moved to Mexico in 2009 with the vision of helping Mexican entrepreneurs create technology companies and the goal of launching Mexico’s first technology focused venture fund to support the growth of Mexico’s venture capital industry. At the time, Mexican entrepreneurs had no where to turn for startup funding. Banks wouldn’t lend after [...]

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Patients as Partners 2018

Being "Patient Centric" is the buzz phrase in healthcare, but what does it actually mean? Maybe it means involving patients at the earliest levels of clinical trial construction. Patients as Partners (#Patients2018) is a conference being held in Philadelphia, PA on March 15-16 that gathers patients, industry, academia, government and nonprofit organizations to collaborate [...]

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Managing Bone Disease With Multiple Myeloma

Bone disease is a common but challenging complication of multiple myeloma. More than 80% of myeloma patients suffer from bone lesions leading to pain, fractures, spinal cord compression and mobility issues.  In normal bone developments, osteoclasts are cells that breaks down bone so it can be re-absorbed by the body. Osteoblasts generate new bone. These two [...]

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What Dana Farber Researchers are Learning from the PCrowd Smoldering Myeloma and MGUS Study

The Dana Farber Center for Prevention of Progression of Blood Cancers study (PCrowd) for smoldering myeloma and MGUS patients shared results that help better identify smoldering myeloma patients who are at risk for disease progression. Their results show that performing next generation sequencing in smoldering myeloma patients can identify genomic changes linked to high-risk and [...]

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Clinical Trial: Juno Therapeutics CAR T Cell Therapy for Relapsed or Refractory Myeloma

Juno Therapeutics today opens its Phase 1/2 study to determine the safety and efficacy of JCARH125, a CAR T-cell product that targets B-cell maturation antigen (BCMA), in adult patients s with relapsed or refractory multiple myeloma. The study will include a Phase 1 part to determine the recommended dose of JCARH125, followed by a Phase 2 [...]

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Our Next Show: Safer and More Effective Allo Transplants in Myeloma and Targeting Precursor Myeloma Cells with William Matsui, MD, Johns Hopkins University, Friday, February 16 @ 2:30 Eastern

Friday, February 16, 2018 @ 11:30 am Pacific, 12:30 pm Mountain, 1:30 pm Central, 2:30 pm Eastern Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer Allogeneic stem cell transplant was the first ever immunotherapy available for multiple myeloma patients. Dr. Matsui shares how the Johns Hopkins allo transplant procedure [...]

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Full Show: Dr. Martin Kaiser on Myeloma Treatment in the UK and the Study of Myeloma Genomics

Thanks to our episode sponsor, SparkCures     Martin Kaiser, MD Institute of Cancer Research Interview Date: February 5, 2018   Summary Martin Kaiser, MD of the Institute of Cancer Research in the United Kingdom joins Myeloma Crowd Radio at ASH 2017 to discuss myeloma care in the United Kingdom and how the [...]

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Clinical Trial: Carfilzomb, Lenalidomide and Dex for Smoldering Myeloma

More treatment options are being considered for high risk smoldering multiple myeloma patients who are likely to progress to active myeloma.  The current standard of care for smoldering myeloma is close follow-up without treatment until multiple myeloma develops. However, researchers are studying possible treatments for smoldering myeloma itself. One possible treatment involves a combination of cancer [...]

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Using Selinexor with Daratumumab and Dexamethasone for Relapsed or Refractory Myeloma Patients

Cristina Gasparetto, MD recently shared information about a new drug combination for relapsed and refractory myeloma patients whose myeloma has become resistant to proteasome inhibitors and immunomodulatory drugs. A Phase II study combined the new drug selinexor with the monoclonal antibody daratumumab and the steroid dexamethasone. Selinexor is a selective inhibitor of the protein exportin-1 [...]

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Immune System Status May Be Why Myeloma Incidence Increases With Age

A new study has found that changes to the immune system as we age may play a bigger role in the development of cancer than the acquisition of genetic mutations according to Australian researchers from the University of Dundee. It is known that cancer requires several mutations to become active, so much of today's research [...]

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Clinical Trial: Daratumumab with Revlimid/Velcade/Dex for Newly Diagnosed Myeloma Patients

Revlimid, Velcade and dexamethasone (RVd) are one of the preferred induction therapies prior to transplant. With the good outcomes seen by adding daratumumab to these standard therapies for relapsed or refractory patients, researchers want to know if adding dara to RVD will help extend outcomes if added at the beginning of treatment. Peter Voorhees, MD [...]

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March 24, 2018, Myeloma Crowd Round Tables: Baltimore, Maryland

Register Now Myeloma Crowd Round Tables on High-Risk Disease are day-long patient education meetings featuring world class experts to assist patients and caregivers to make decisions about their treatment and care. The presentations make the most difficult issues in myeloma research and treatment—high-risk, relapsed and refractory disease—understandable in plain language.  Myeloma Crowd Round Tables provide [...]

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Family Genetic Mutations Linked to Multiple Myeloma Risk

Multiple myeloma has historically not been considered an "inheritable" disease. But myeloma researchers at the University of Utah and others have found that two familial gene regions could contribute to the development of multiple myeloma. They shared their findings in a recent paper in PLOS Genetics. Tracking the DNA of family histories can help geneticists track [...]

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Using Light To Eliminate Multiple Myeloma at Washington University

To hear Washington University researchers speak on this topic, register for the Myeloma Crowd Round Table in St. Louis on March 10.   A new anti-cancer strategy wields light as a precision weapon. Unlike traditional light therapy — which is limited to the skin and areas accessible with an endoscope — this technique can target and [...]

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The Role of the Bone Marrow Environment in MGUS or Smoldering Myeloma Progression

Dana Farber Cancer Institute myeloma specialists are studying reasons that MGUS or Smoldering Myeloma patients progress to active myeloma. One key reason could be what is happening in the bone marrow microenvironment. The known progression from MGUS and often through an intermediate stage called smoldering myeloma supports the idea that clonal evolution of cancer cells [...]

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Clinical Trial: KITE CAR T Cell Therapy for Relapsed/Refractory Multiple Myeloma Opens Phase I Study

KITE Pharma, Inc. is opening a Phase I clinical trial testing its CAR T cell therapy called KITE-585 for safety and effect on multiple myeloma. The therapy is a fully human anti-BCMA CAR T therapy. Data was presented in 2016 from their pre-clinical studies that showed potent activity in the lab and in mice against [...]

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