Myeloma Minute July 2, 2015

This week's question: How do I find a myeloma specialist in my area?

Multiple Myeloma Bone Study
 

New Ixazomib Clinical Trials: Learn How to Participate

Join the conversation about myeloma on the Smart Patients Message Board

Upcoming Events

Saturday, July 19, 2015
The Red House Carnival
Somerville, Massachusetts

Friday, July 24, 2015
Chek Fest Golf Outing
Allendale, Michigan

August 21-22, 2015
IMF Patient & Family Seminar
Los Angeles, California

Saturday, October 10, 2015
9th Annual Comedy Celebration
Los Angeles, California

Watch the IMF Mambo for Myeloma & Support This Challenge

On June 26, the Committee for Medicinal Products for Human Use (CHMP), an advisory committee of the European Medicines Agency (EMA), released a positive opinion regarding European approval of Farydak® (panobinostat) for the treatment of myeloma in certain cases. While this doesn’t mean Farydak has been approved, it’s an important first step in the EMA’s process. CHMP’s statement in particular supports the use of Farydak in combination with Velcade® and dexamethasone for myeloma patients who have relapsed and have already tried at least two prior treatment regimens. Read the announcement HERE.

Myeloma patients need to have access to their medical records. But gathering years of data from dozens of different providers can be a challenge. At this summer’s annual Support Group Leader Summit, the IMF will present an educational session outlining which medical records are most important to have instantly available and how to get them—knowledge that leaders can pass along to their support group members. Another source of guidance was published Monday in a Wall Street Journal article titled “How to Take Charge of Your Medical Records.” And, in time for Independence Day, a campaign called “Get My Health Data,” started by Dr. Farzad Mostashari, former National Coordinator for Health Information Technology at the US Department of Health and Human Services, is asking people to sign a petition endorsing easy electronic access to patients’ records in order to “free” them. Click HERE to sign the petition and to learn how to find the information you need to better manage your health.

The IMF will host a two-day Patient & Family Seminar August 21-22 at the Sheraton Universal Hotel in Los Angeles, California. What do you get at an IMF Patient & Family Seminar? Attendees will receive the latest information on myeloma, access to many of the top myeloma experts, and a chance to share the company and support of other myeloma patients and family members. For more information, or to register, please click HERE.

Our IMF friends in the Virginia area are invited to join the 3rd Annual Wine Tasting and Tour of King Family, First Colony, and Cooper Winery on Saturday, September 26, from 8:00 am to 5:30 pm. Join event organizer Nancy Riable and others for a fabulous full day of wine tasting, scenic mountain views, socializing and fun, all while supporting the programs and research initiatives of the IMF. The event includes transportation, lunch and the wine tastings of three distinct wineries along the James River. To RSVP, or donate, please visit the event page, HERE.