Should Multiple Myeloma Patients Undergo Genetic Testing?

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What’s the best way to access genetic testing?  Is it necessary? Is it expensive?  Does insurance cover the costs?  Experts from the UAMS Myeloma Institute share their advice and combined knowledge.  Listen as Drs. Gareth Morgan, Frits van Rhee, and Faith Davies discuss gene expression profiling including when and where to get it done.  They also review what’s covered by insurance as well as liquid genetic profiling.

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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. 

Esther Schorr:

This question is from Pam who was just recently diagnosed with multiple myeloma. She says that she’s been listening to a lot about genetic testing today. And, at this point, she’s not had any of that testing. So her question is kind of multi-part. She said how does she get access to the testing? Is it expensive? Is it typically covered by insurance?

She just kind of wants some additional input about it.

Dr. Morgan:         

So it is covered by insurance. It’s important it’s done when you’re first diagnosed when the disease is in remission. There’s nothing there to characterize. It does help doctors. We do adjust the treatment. If you haven’t had it, you shouldn’t worry. But my strong message to people is when you’re first diagnosed, have a bone marrow sample taken and have the genetic testing done. In the future, there will be blood biopsies. So we think we’re a year away from an effective blood biopsy that will be generally available. But, largely, at this point in time, you need the bone marrow, and you need a specialist center.

Andrew Schorr:

Can I just make one comment about bone marrow biopsy?

So first of all, if you’ve had a bone marrow biopsy, raise your hand. Everybody. Okay. If you’ve had more than one, raise your hand. Most people. Not fun. I don’t know how you do it here. I’ve had it a variety of ways. And even now, at UC San Diego, and I don’t know whether insurance pays for this, they even have they put you to sleep, and they do a CT guided. Other places, they do nothing. And it’s variable. But it’s not necessarily the most pleasant experience. But it varies. But it gives you tremendous information.

And now that we don’t have the liquid biopsies yet, maybe you want to take this Dr. van Rhee, so it’s really important that we give you the data, if you will, so you can help us. And bone marrow biopsy, right now, helps you do that.

Dr. van Rhee:      

That’s correct. And to return to the previous question, I think there are different forms of genetic testing.

What was referred to is probably what we call the gene expression profile. That’s the expression of certain genes in the bone marrow, which we find predictive of outcome. And we are one of the few centers in the United States or in the world who actually base our treatment strategy on the gene expression profile, so patients with so-called what we call high-risk myeloma get a completely different treatment approach than patients that have what we call standard or low-risk multiple myeloma. And the test is commercially available.

Andrew Schorr:

Okay. So, Faith, just a question for you. You and I spoke earlier today in another interview we’ll publish on Patient Power about genetic testing. So that’s something that they questioners should really advocate for so that, whether it’s at a specialty center like this or partnership with their community oncology, she gets what’s right for her. She should ask for that.

Dr. Davies:            

Yes, I think so. We need to have the maximum amount of information both as a patient and a doctor so that we can make the right decision for that individual patient. And so, yes, trying to get all of that information together, be it the genetic testing, being it very good imaging. So not just using standards, X-rays, using the MRI scan and the PET scan, so you can really see where the myeloma is and what damage it might be causing is really important. And, as you say, ask if your doctor isn’t able to provide that, asking your doctor where you might be able to access that from is really important.

Andrew Schorr:

Okay. Now, this relates, Frits, for you, what you were just saying. You were saying what tests you were doing here and informing treatment for high-risk myeloma. So you said there are tests that are commercially available.

Is there standardization of tests? That’s been a problem with some cancers. And different test results didn’t equal other test results. And we want to be able to even move around among centers, maybe have a test for the community oncology center to bring that data to you, for instance. And everybody is talking the same language. Where are we with that now?

Dr. van Rhee:      

There are, obviously, guidelines available what certain tests mean. However, if genetic testing is done with tests called FISH in which we look at certain hot spots in the genome for abnormalities, different laboratories will look at different things, so not everything is uniformly looked at in the same fashion.

So there is need for further standardization of what actually should be done, in my view. 

Andrew Schorr:

Right. Gareth, you talk to people around the world. Are you pushing for that?

Dr. Morgan:         

So we’re uniquely placed in that, currently, we’ve assembled all of the genetic tests that have been done in the world, more or less. So we have over 3,000 whole sequence genome sequence samples. And we’re going to use that data to segment myeloma into different segments that should be treated differently. And on the basis of that test, we should be able to make, by about Christmas time, that kind of technology available to the rest of the world so that things can be standardized. And there’s a really, really important thing that patient groups can do, which is to push for standardization.

Harmonization of approaches so that doctors do things in similar fashion, not to prevent progress for what’s known to really implement in a standard fashion across the country—and that’s one really major thing that we can do in the next couple of 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. 

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Page last updated on November 22, 2016