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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.

Foundation Update Newsletter September 2020

Originally Published: 09/22/2020

Treatment Approaches in AML: Key Testing for Personalized Care

Originally Published: 09/16/2020
VIDEO  Description:  Treatment Approaches in AML: Key Testing for Personalized Care from Patient Empowerment Network on Vimeo. When it comes to Acute Myeloid Leukemia (AML), genetic testing (or biomarker testing) is essential in helping to determine the best treatment approach for YOU. In this program, AML expert, Dr. Naval Daver reviews key decision-making factors, current AML treatments and emerging research for patients with AML. Dr. Naval Daver is an Associate Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center.   Watch the video and read the...

Researchers describe impact of SF3B1 mutations in myelodysplastic syndrome

Originally Published: 09/14/2020
SF3B1 mutations occurred more frequently in de novo myelodysplastic syndromes than therapy-related myelodysplastic syndrome, according to results of a phase 2 study presented at Society of Hematologic Oncology Annual Meeting. Additionally, SF3B1 mutations appeared associated with improved survival among patients with de novo vs. therapy-related myelodysplastic syndrome (MDS). However, among patients with treatment-related disease, those with SF3B1 mutations had better outcomes than those with wild-type SF3B1. (Article and Charts continue at link)

Talati Highlights “Game-Changing” Potential of Venetoclax/HMA Combos for Elderly AML

Originally Published: 09/08/2020
Chetasi Talati, MD, discusses early results from a multicenter chart review examining treatment patterns and outcomes of patients with newly diagnosed AML who received venetoclax/HMA combinations in the real-world setting and the next phase of the ongoing research initiative. Chetasi Talati, MD Chetasi Talati, MD Early data suggest that the low-intensity combination of venetoclax (Venclexta) and hypomethylating agents (HMAs) may be a “game-changer” for patients with relapsed/refractory acute myeloid leukemia (AML), according to Chetasi Talati, MD, especially for older patients who may not...

FDA approves Onureg (azacitidine tablets) for acute myeloid leukemia

Originally Published: 09/01/2020
On September 1, 2020, the Food and Drug Administration approved azacitidine tablets (ONUREG®, Celgene Corporation) for continued treatment of patients with acute myeloid leukemia who achieved first complete remission (CR) or complete remission with incomplete blood count recovery (CRi) following intensive induction chemotherapy and are not able to complete intensive curative therapy. Efficacy was investigated in QUAZAR (NCT01757535), a multicenter, randomized, double-blind, placebo-controlled trial. Patients (n=472) who achieved CR or CRi with intensive induction chemotherapy with or without...

Patient and physician perceptions about blood transfusions in the myelodysplastic syndromes

Originally Published: 09/01/2020
Abstract Background Little is known about the shared decision-making between patients with transfusion-dependent (TD) myelodysplastic syndromes (MDS) and their physicians about the benefits, risks, and alternatives to reduce the need for blood transfusions. Methods and Materials We conducted interviews and two cross-sectional surveys of MDS patients and MDS physicians in the US about the use of blood transfusions and disease-modifying therapies (DMTs). Responses from 157 MDS patients and 109 MDS physicians were analyzed. Results (continued at link)

Understanding the Impact of Telomere Length and Mutations on Transplant Outcomes

Originally Published: 08/31/2020
Advances in Hematologic Malignancies Issue 12, Summer 2020 — R. Coleman Lindsley, MD, PhD Identifying patients at high risk of fatal treatment toxicity is a central challenge in allogeneic hematopoietic stem cell transplantation (HSCT). More accurate prediction of non-relapse mortality (NRM) risk could inform clinical decisions about timing and approach to HSCT. Short telomere length impairs the cellular response to genotoxic and replicative stress, and limits the regenerative potential of many tissues, including the gastrointestinal mucosa and bone marrow. We recently completed a study that...

Guideline-based indicators for adult patients with myelodysplastic syndromes

Originally Published: 08/25/2020
Key Points GBIs are measurable elements for quality of care and are currently lacking for adult MDS patients. We developed a GBI consensus for the domains of diagnosis (n = 14), therapy (n = 8), and provider/infrastructural characteristics (n = 7). Myelodysplastic syndromes (MDSs) represent a heterogeneous group of hematological stem cell disorders with an increasing burden on health care systems. Evidence-based MDS guidelines and recommendations (G/Rs) are published but do not necessarily translate into better quality of care if adherence is not maintained in daily clinical practice....

What's New! Foundation Update Newsletter August 2020

Originally Published: 08/25/2020
Discover all the news for you! For you in this issue: Virtual Conference for Fall | 2020 Leadership Awards |Scientific Symposium Highlights | Fresh, New, Webinars | PNH Week | Clinical Trial | Jocelyn's Story | National Conference Recordings   Please follow the link for the full document!

TP53 Mutation Status Possesses Prognostic Implications in MDS

Originally Published: 08/14/2020
Patients with myelodysplastic syndromes (MDS) who have biallelic TP53 have worse outcomes, such as treatment-resistant disease, rapid disease progression, and low overall survival, versus those with monoallelic mutations, according to results from a study published in Nature Medicine.1 “In recent years, we have characterized which mutations are present in MDS and have established diagnostic tests that map which mutations are present in every patient. This information is used to guide treatment decisions; this is the vision of precision medicine,” Elli Papaemmanuil, PhD, the senior author of...
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