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Newsstand

Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

AML study reports high response rates with combination targeted therapy

Originally Published: 12/12/2017
Initial findings from a multi-national open-label phase Ib study of inhibitory drug therapy for relapsed or refractory acute myeloid leukemia (AML) have demonstrated a complete response in up to 50 percent patients say researchers at The University of Texas MD Anderson Cancer Center .  Complete article here

Genetic Mutations for AML found Years before Diagnosis

Originally Published: 12/12/2017
 Patients with acute myeloid leukemia (AML) may have genetic mutations in their blood indicating they are at high risk of developing the disease about nine years before diagnosis, according to research from Weill Cornell Medicine and NewYork-Presbyterian investigators. They presented their findings at the 59th annual American Society of Hematology meeting on Dec. 10 in Atlanta, Ga. Full article here

Recent, Future Advances on Display at ASH

Originally Published: 12/09/2017
Blood disease specialists from around the world will hear about practice-changing clinical progress and the latest research advances in their field, as the American Society of Hematology (ASH) annual meeting begins here today.  (please select link)

Promising new advances in AML therapy

Originally Published: 11/15/2017
Drug therapy for acute myeloid leukemia (AML) is finally undergoing major changes in 2017. This is due to the US Food and Drug Administration’s approval of several new, targeted agents (midostaurin, enasidenib, and gemtuzumab ozogamicin). Paired with the recent approval of a novel liposomal formulation of daunorubicin/cytarabine (CPX-351/Vyxeos), the standard of care is changing rapidly in AML for subgroups. This review will focus on currently approved agents and promising novel agents in development and will highlight controversial areas in targeted treatment.

Joint study by AAMDSIF/NORD on PNH

Originally Published: 11/06/2017
Paroxysmal Nocturnal Hemoglobinuria has an adverse impact on patients’morbidity and mortality, however, little research has been performed to understand their experiences from onset of symptoms to diagnosis. The purpose of this study was to elucidate the patients’ path to diagnosis and impact on certain aspects of quality of life surrounding the diagnosis of PNH.A 32-question survey related to the path to diagnosis was distributed to patients identified as having PNH from the Aplastic Anemia and MDS International Foundation and the National Organization for Rare Disorders databases.Patients...

Cancer specialist shares a diagnosis close to home

Originally Published: 11/01/2017
“I want you to talk to me like I’m one of your patients, not like I’m your mother.” My mom’s familiar voice came over the car’s speakers via the Bluetooth connection to my phone as I drove home. She had left a voicemail an hour earlier asking me to call her back, which was never a good sign. My mother, still working as an administrator in Rhode Island at age 74, was not the type to mince words, nor ask for a return call to discuss trivialities. I asked her what was going on. “I had a cold that wasn’t getting any better, so I went to an urgent care clinic to get some antibiotics.” I avoided...

Amazing journey of T-cells for CAR-T

Originally Published: 10/27/2017
BOSTON — Dave Matthews describes his cancer as “the monster inside me.” It’s the one thing he cannot control. And over the summer, it began to look as though the monster would prevail. After six months of treatment and a grueling eight rounds of chemotherapy, Matthews’s lymphoma had stopped responding to medicine’s best efforts. For most patients, that’s the end of the line. Matthews’s doctors, however, gave him one more option. It would involve siphoning out his white blood cells and sending them on a cross-country expedition so genetic engineers in a factory outside Los Angeles could train...

What the Future May Hold

Originally Published: 10/24/2017
Dr. Jason Butler and his team discovered that aged blood vessels strongly influence the functional characteristics of blood stem cells.  Transplantation of young blood vessel cells into older mice makes their aged stem cells take on the characteristics of young stem cells. This image shows a blood-vessel defect that occurs as a result of aging: the increased presence of reactive oxygen species (magenta) in aged bone marrow-derived blood vessels (depicted in red and green with blue nuclei). The excess buildup of reactive oxygen species can interfere with the ability of blood vessels to...

Repurposing older drugs to help prevent GVHD

Originally Published: 10/18/2017
The oral histone deacetylase (HDAC) inhibitor (vorinostat) is safe and results in low incidence of acute graft-versus-host disease (GVHD) after reduced-intensity conditioning, related donor hematopoietic cell transplantation (HCT). However, its safety and efficacy in preventing acute GVHD in settings of heightened clinical risk that use myeloablative conditioning, unrelated donor (URD), and methotrexate are not known. We conducted a prospective, phase 2 study in this higher-risk setting. We enrolled 37 patients to provide 80% power to detect a significant difference in grade 2 to 4 acute...

Foundation Update - October 2017

Originally Published: 10/12/2017
Foundation Update Newsletter - October 2017 Confronting Challenges in Finding Matches for Multiracial Patients 34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry. She’s directed numerous bone marrow drives and fundraisers, bringing thousands of new DNA donors to the registry. However, her own path to finding a donor has been challenging and frustrating....