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Steep Learning Curve at ASH Worth Climbing: A Patient's Perspective

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I'm off to New Orleans, site of this year's American Society of Hematology (ASH) conference.  Through the IMF, I'll be blogging each night about the highlights that occurred earlier that day. 

As background, I attended my first ASH meeting seven years ago and found it a bit like being diagnosed with myeloma nearly 19 years ago. The terminology and amount of information was overwhelming, understandably though since the intended audience is the 20,000 researchers and oncologists, presenting and learning the latest updates for blood cancers, including myeloma (MM). I loved learning whatever I could understand because I was energized by all the great research being done. I learned so much at that first meeting and haven't missed an ASH conference since. 

I also learned to prepare a few weeks ahead of time, creating my personal agenda of talks I want to attend. These presentations will typically be on clinical trial results rather than on biological lab studies because these are more immediate value to patients currently in treatment or soon to be diagnosed.

Officially, the ASH meeting runs from Saturday, Dec. 7 through Tuesday, Dec. 10.  Each day consists of:

Exhibit Hall: Analogous to a trade show in Silicon Valley (my home) where pharmaceutical companies (nearly 300), medical suppliers, research and diagnostic companies, non-profits, and publications involved with blood cancers have a booth and provide product information. IMF has a booth where they interview MM experts for subsequent posting on their website.

Posters Hall:  Each day, over 1,000 new 5x3-foot posters are hung displaying research projects from selected abstracts with details of background, method, patient demographics (could be Mouse Models), results for both responses and adverse side effects, and conclusions. 

Oral Presentations: Nearly 1,000 abstracts are designated for oral presentations, typically 10 minutes of slides and 5 minutes for Q&As. Unfortunately, there are simultaneous presentations, so no one can attend everything, even for just a single disease like MM...thus the reason for working out my agenda before arriving at ASH.

Today (Friday, Dec. 6), the day before the official start of ASH, is designated as Symposium Day, with Symposium sessions scheduled for 3 to 4 hours in the morning, afternoon and evening. For example, the IMF symposium is tomorrow afternoon with a panel of Myeloma experts discussing various MM issues. While answers in these sessions cannot include information yet-to-be-released at ASH, it's always fascinating to see how MM experts have different opinions/recommendations to handle various patient case studies or posed questions for which there's no definite answer yet...welcome to the world of myeloma. I'm sure some of those differences will also be heard at the IMF Monday night debate, which can be heard live here.

Friday morning I'll be attending a meeting of the IMF's Global Myeloma Alliance.  Our first meeting was this past summer and the goal of these 20+ advocates is to address several of the international MM issues, such as the unavailability of certain treatments due to government regulations. 

I'm with several other patients the IMF brought to ASH. We'll be blogging, posting on Facebook, and Twitter, and we hope to keep you well informed from our individual patient perspectives.  Of course, you'll have other vehicles to learn about ASH in the weeks that follow, including webinars, telephone conferences, seminars and more. Maybe your own oncologist will be at ASH. Take advantage of these resources and become your own best patient advocate.  

Ready for 4.5 days of information,

--Jack Aiello

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