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Teaching You to Become Your Own Best Patient Advocate

| Jack Aiello

I’m off to Orlando, site of this year’s American Society of Hematology (ASH) conference. ASH is all about blood cancers (leukemia, lymphoma, multiple myeloma) and there are nearly 800 posters presented on myeloma alone. I’m so grateful to the International Myeloma Foundation (IMF) and their sponsors for sending me, and I look forward to blogging at night about each day’s highlights. Finally, I’ll create a multi-page summary of the most interesting takeaways from my perspective and share this with my support group, post it on our website, and distribute to anyone else who requests it.

As background, I attended my first ASH meeting 10 years ago and found it a bit like being diagnosed with myeloma (more than 20 years ago). The terminology and amount of information was overwhelming, understandable though since the intended audience is 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 have more immediate value to patients undergoing treatment or to the newly diagnosed.

Officially, ASH runs from Sat, December 5 to Tuesday, December 8. Each day consists of the following:

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

Posters Hall: Each day over a 1000 new 5′ x 3′ posters are hung displaying research projects from selected Abstracts with details of Background, Method, Patient Demographics (could be Mouse Models), Results for both Responses & Adverse Side Effects, and Conclusions.

Oral Presentations: Nearly 1000 Abstracts are designated for oral presentations, typically 10 minutes of slides and 5 minutes Q&A. Unfortunately, there are simultaneous presentations so no one can attend everything, even for just a single disease like MM. That’s the reason I work out my agenda before arriving at ASH.

Friday, the day before the official start of ASH, is designated as Symposium day, with Symposiums scheduled for 3–4 hrs in the morning, afternoon, and evening. For example, the IMF symposium is Friday afternoon with a panel of myeloma experts discussing various MM issues. Even though 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 how they pose questions for which there’s no definite answer yet . . . welcome to the world of myeloma.

Along with several other patients/support group leaders the IMF brought to ASH, we look forward to sharing our experiences together via blogging and tweeting. 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.

Follow Jack on Twitter: @JackMAiello
http://www.sfbayareamyelomasupport.org
San Francisco Bay Multiple Myeloma Support Group
Meeting locations vary throughout the SF Bay

 

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