Newsstand | Page 13 | Aplastic Anemia & MDS International Foundation


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.

MDS Update - December 2017

Originally Published: 12/19/2017
MDS Update Newsletter - December 2017

Knowing financial burden of SCT/BMT yields better quality of life

Originally Published: 12/14/2017
  More than one-fifth of patients undergoing hematopoietic cell transplantation (HCT) reported a lack of awareness of financial burden prior to the procedure, according to research presented at the 59th American Society of Hematology Annual Meeting & Exposition (December 9-12, 2017; Atlanta, GA).  Full article here

Quality of life varies by diagnosis for MDS patients

Originally Published: 12/13/2017
The relationship between transfusion dependency and health-related quality of life (HRQOL) in patients with myelodysplastic syndromes (MDS) may differ based on disease risk at diagnosis, according to research presented at the 59th American Society of Hematology Annual Meeting & Exposition (December 9-12, 2017; Atlanta, GA). Please find full article here. 

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...