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Why My Myeloma Specialist Recommended Genetic Testing

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Published on February 11, 2020

Key Takeaways

  • Seeing someone who specializes in your type of cancer can help patients make more informed treatment decisions.
  • A tetrasomy means having four copies of a particular chromosome instead of the normal two.
  • A trisomy is when a person has three copies of a chromosome instead of two.

Multiple myeloma patient and advocate Doug Kenaley participated in Patient Power’s Patient Café to share his experience with genetic testing and treatment. Watch as Doug discusses the results of his FISH and cytogenetic testing, why he felt it was important to go to an academic center and what standard risk means when choosing therapy.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation, Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control and Patient Power is solely responsible for program content.

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Transcript | Why My Myeloma Specialist Recommended Genetic Testing

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.

Doug Kenaley:            

I’m Doug Kenaley. I was diagnosed in 2015, and my initial induction treatment is a little different than most. It was really only—it turned out to be bortezomib (Velcade) and dex (Decadron), and it got me down to the level where I could have a stem cell transplant, so then, I had an auto stem cell transplant. And then, about five months after that, I joined the elotuzumab maintenance trial, so I’ve been on elotuzumab (Empliciti) and lenalidomide (Revlimid) since that point.

Jack Aiello:                 

You begin maybe with a FISH and cytogenetics testing. Doug, when you had that, did that yield anything interesting for you?

Doug Kenaley:            

Mine was a bit interesting because I went to a local oncologist, even though I was here in Houston, who’s close to me, and he had done a stint at MD Anderson. And so, he presented it to me when I was diagnosed—“You should have genetic testing right away.” So, I looked into it and thought it was a good idea, even though four years ago, even, there wasn’t a whole lot more—you have a test, but then what? That kind of thing.

This emphasizes why a lot of times, you want to go to a specialty place like MD Anderson, because they did the bone marrow biopsy, and the tech put it in the wrong solution, and it destroyed the sample. But they were going to hold off my induction. So, the doctor was pretty mad, but my first attempt was a failure. But then, he said, “Well, ultimately, you’ll probably go for a stem cell transplant. We’re going to hook you up with MD Anderson right away, even during your induction.” And, the first thing they do here is genetic testing. 

So, at that point, I got a genetic test—successful genetic test – and it was interesting because the results came in, I got the labs, and I’ve done science—I’m a scientist, I’m a geologist—but it’s just a lot of alphabets, and it’s very complicated. They’re worse in the summaries. It said, “No deletions found, no translocations found,” things like that, but you really couldn’t understand the rest of what was in there, and you kind of suspect there was something hidden in there.

But I sat down with the doctor here, and he went over it. It said basically, I was a standard-risk patient, and my FISH and cytogenetics showed that I had tetrasomies—so, four versions of the genes instead of the normal two. And, he says, “So, if you want to look at it, that’s kind of a good news thing because we have drugs that target certain things, you have lots of those things to target—multiple copies of those things,” so that kind of relaxed me a little bit. I think it actually impacted my standard of care a little bit, and certainly, my quality of life, because I think the doctors relaxed a little bit too. They want to get ahead of it if you’re high-risk. 

Jack Aiello:

Anything else, Doug, that you thought was interesting that came out of your genetic testing?

Doug Kenaley:            

It looked pretty standard and fairly boring to people who liked exciting genetic testing. I did have two, so I had one – so, my original doctor says, “We like to get patients early to get an original profile.” That’s kind of like your baseline. And, I also had one right before my stem cell transplant  because they like to check to see if anything happened, but the doctor says the chemo messes with  myeloma—obviously, that’s why you have chemo – and he says, “You’ll probably see some  differences, but that’s why we like an original one, too.”

So, I compared the two, and really, there were no extra risks—high risks or anything – that appeared. The only thing that popped up was instead of tetrasomies, I had trisomies also, but that was pretty much it. So, it didn’t really change anything in terms of treatment in terms of work that was being planned.                          

If you follow any of the myeloma discussions, it is almost all genetics now. That’s kind of where cancer research has gone, even in other cancers. But, one of the things that I see genetic testing is doing is my ability to help the doctor help me.

So, if it was more difficult to get genetic testing—maybe not local to a major facility or something—I would still encourage it because that’s helping the doctor see your specific disease, and maybe helping them modify what you have as a standard treatment in terms of what you need instead of the standard treatment. Plus, you have it in the bank then. You have your test, and if something is discovered a year from now, that this particular drug works with this particular genetic profile, you can go back, and look, and say, “Do I have that? Is that something I should consider?” 

One of the things that are kind of an intangible benefit is even your own stress level. You would think that,  for instance, if you’re tested and you find out you’re not high-risk, you’re standard-risk, that’d be the  end of it, but it turns out, for instance, even with me, my doctors will actually modify—have  modified my treatments, even my maintenance treatments, because I’m not high-risk and I have  very stable myeloma. 

So, they’ll say, “Well, we’re going to de-escalate. We’re going to take you off all these drugs. You don’t need all of them, so we don’t want to over-treat, either.” Nobody wants to be over-treated with all the symptoms and things like that. When they initially said that, I was like, “Wait a minute, I’d rather just start adding drugs. Let’s just kill this thing.” But, that’s right, and I think the fact that I can go back to genetic testing and look at what he was saying about stability over a period of years and things like that just gives me more of a comfort level that that’s probably the right answer, and I don’t need to be taking all these drugs if they’re not going to benefit me in the long term, or I could switch drugs if I need to.

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.

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