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Myeloma and Longevity: A Man With Myeloma for Over 25 Years

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Published on May 8, 2019

As part of our coverage of the 5th Annual HealtheVoices Conference in Dallas, Texas, Patient Power founder Andrew Schorr is joined by devoted multiple myeloma patient advocate Yelak Biru, who was diagnosed in 1995 and has lived nearly half of his life with the condition. Watch as Yelak, after living through 25 years of changes in research and treatment developments, offers advice to others on a myeloma journey.

For more information about Yelak, you can follow him on Twitter at https://twitter.com/NorthTxMSG or visit his support group’s website: http://northtexas.myeloma.org/

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Transcript | Myeloma and Longevity: A Man With Myeloma for Over 25 Years

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Andrew Schorr here in Dallas, Texas, and sitting next to me is a man, Yelak Biru, who's known myeloma almost half his life.  You're 50? 

Yelak Biru:

I will be 50 next year.  

Andrew Schorr:

And you were diagnosed when?

Yelak Biru:

In 1995, when I was 25 years old.  

Andrew Schorr:

All right. So we're talking about basically half your life.   

Yelak Biru:

Half my life. In 2020, I call it my 50/50 year. I will be living 25 years post?diagnosis and 25 years pre?diagnosis.  

Andrew Schorr:

So you've seen a lot of change, and you're a lucky boy.  

Yelak Biru:

I am.  

Andrew Schorr:

Because—give me some statistics.  You have a support group in north Texas, and the longevity early on—well, for you, you're a pretty rare guy.  

Yelak Biru:

I'm an outlier and a grateful outlier, for that matter.  I am an example of people who have been able to live long with myeloma and actually incorporate life into their myeloma or myeloma into their life. And there are many other people that I know that have been living with it 10, 15, 20, and one of my mentors, Jack, actually has been living with it for 24 years.  

Andrew Schorr:

Right. Yeah.  Jack Aiello?  

Yelak Biru:

Yes.  

Andrew Schorr:

Yeah, we love him, and he's often been on our programs.  

So let's talk about what you say to patients and family members today with more and more lines of therapy, clinical trials, research that they continue to try to tweak and improve upon with like chimeric antigen receptor T-cell therapy.  What do you say when somebody comes to your support group now and their head is low and they're thinking this is the end?  

Yelak Biru:

So the first thing I tell them is who I am, when I was diagnosed and how long I have been living with it, and when people hear that they kind of perk up, and they start paying attention.  Then I start telling them the importance of having a myeloma team and you needing to be educated about your myeloma really, really well.  

But most importantly going to a myeloma specialist.  Those that go to a myeloma specialist have a different trajectory in their outcome with living myeloma than those that don't go to a myeloma specialist.  

Andrew Schorr:

Right.  So here we are with the changing landscape in myeloma, more clinical trials, more combination therapies, learning about the genomics, should you have a test to see is there a variation in your myeloma that can be targeted, and then this whole area of immunotherapy.  Does that come into play?  Can they—have a virus combined with medicine and hit your myeloma? So it gives people a great deal of hope. Now, do you think that one day we can see a cure because we—it's becoming chronic?  

Yelak Biru:

Yes.  

Andrew Schorr:

So that's good. 

Yelak Biru:

For some.   

Andrew Schorr:

For some, but we want to knock it not just down but we want to knock it out.  

Yelak Biru:

Some specialists actually say some subset of myeloma patients are already being cured. The goal is, though, to define what cure means and ensure that there are ways of being able to achieve that in a consistent way at least for some subset of the myeloma community, and I am hoping we are close to doing that or the specialists are close to doing that with inputs from myeloma patients like me.  

Andrew Schorr:

Okay.  So this is a man who lives with data all the time. And he's analyzing it.  So you're looking closely and you're getting his kind of summary of where things are and where they may be going.  So the actionable things are see a myeloma specialist, get a clear state?of?the?art work?up of your version of myeloma, right? 

Yelak Biru:

Yes.  

Andrew Schorr:

Stay informed, and if you can participate in a virtual or in?person support group, there will be a lot of love.  

Yelak Biru:

Yes.  

Andrew Schorr:

And you'll know you're not alone—and for your family, too.  

Yelak Biru:

The myeloma community is very well connected and wants to provide support, and those of us that have been fortunate to live with myeloma for a long time know that we are standing on the shoulders of those that have come before us, and we are really wanting to give back and pay it forward.  

Andrew Schorr:

Okay.  So your 50th birthday is coming up.  

Yelak Biru:

Yes.  

Andrew Schorr:

Diagnosed with myeloma at 25.  We are so glad this man is with us and devoted to advocacy.  So Andrew Schorr with my new best friend, Yelak Biru, and a wonderful leader in the myeloma community.  Take heart from this, folks, and join in, because it will give you so much back.  Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.