Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate from Patient Empowerment Network on Vimeo.

Keeping up with all the changes in myeloma treatment and research can be daunting. Myeloma survivor and advocate, Jack Aiello, shares his tips for keeping up with the latest, including a list of myeloma educational resources.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

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Transcript:

Jack:                           

So, it’s interesting. I’ve mentioned previously how much is changing in myeloma, and I’ve been asked a question of, “How do you stay abreast of all of those new changes?”

And there are several ways. There are some excellent organizations that focus on myeloma. The International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society, Myeloma CrowdCare are just four of them to mention. PEN is Patient Empowerment Network, Patient Power is another site that both offer expertise and help with myeloma. So, websites is a great tool. Many of those websites also offer both webinars and seminars and that can be an excellent resource to learn about myeloma or ask specific questions and get them answered during a live webinar.

And typically, all those webinars are recorded for later replays, so that you can listen to them if you weren’t available to listen to them live. I’m fortunate also that I’m able to attend several of the myeloma conferences. There’s a conference called ASH, the American Society of Hematology, that I’ve attended for the last 10 years. There’s a meeting of the International Myeloma Working Group that I’ve been fortunate to be invited to for the last six or seven years.

These are meetings that doctors meet at to determine best treatments for patients; they provide the latest on research of newer treatments for patients as well, and I get to hear it firsthand. And I think, as I said, the support groups are a good way to stay abreast of the information was well.

Most patients don’t want or need or are not going to get as deeply as involved as I am, but those support groups are a terrific resource for hearing what’s happened over the last month or two. There’s a drug just approved last month for myeloma, and there have been drugs approved previously in the years previous to 2019. So, I think that there are a number of ways to really become educated and more knowledgeable about myeloma.