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What Is Amyloidosis and How Is It Treated?

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Published on March 5, 2020

Key Takeaways

  • 10 percent of active myeloma patients also have amyloidosis.
  • Amyloid is a different type of protein that is found by a biopsy and can affect the heart, kidney, GI tract, skin and tongue.
  • Treatments are similar to myeloma treatments but can depend on symptoms experienced. 

Multiple myeloma expert Dr. Krina Patel, from The University of Texas MD Anderson Cancer Center, explains what amyloidosis is, how it relates to myeloma and treatment options. Watch as she provides clarity on this frequently asked question. 

This town hall meeting is sponsored by Janssen Biotech, Inc. and Karyopharm Therapeutics with additional support to our partner, Myeloma Crowd (MCR), from Takeda Oncology and Foundation Medicine. These organizations have no editorial control, and Patient Power is solely responsible for the content. It is produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center.

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Transcript | What Is Amyloidosis and How Is It Treated?

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.

Jack Aiello:                 

Dr. Patel, can you explain a little bit about amyloidosis and are the treatments different? How does one go about that? 

Dr. Patel:                     

So, yeah. I would say that probably 10 percent of our patients that have active myeloma can also have amyloid, that diagnosis. So, I do have a lot of patients that have both. I have some patients that don’t have myeloma but still have AL, amyloid, that we sort of treat as a plasma cell dyscrasia.

So, what I tell my patients—amyloid is a different protein that we can’t really find in the blood like an SPEP or monoclonal or immunoglobulinsSo, you have to find it by a biopsy of some sort. And there are different types. 

So, plasma cells make amyloid. Sometimes I have patients who have myeloma and their bone marrow might show some amyloid. We do a stain called a Congo red that tells us that. But if it’s not affecting an actual organ, we don’t call that systemic amyloid that we would treat. There’s a difference in terms of is this clinically relevant or not? 

Where it really does affect people—it can get in the heart. It can get in the kidneys. It can get in the GI tract and sometimes the skin and the tongue. Those are the classical places we find it. It’s a protein that’s really sticky. It just gets in and then it causes problems with that organ because it can’t work as well. 

So, for most of my patients, if they have something that they tell me at the diagnosis or even in relapsed disease they’re having really bad diarrhea. It’s not related to the therapy they’re on, I might say let’s get a colonoscopy to find it. 

Treatment is similar but not exactly the same. So, with amyloid and some of our other plasma cell dyscrasias like POEMS and Waldenstrom's that we don’t talk about as much. A lot of our therapy comes from myeloma therapy that we then try. That’s sort of where we are with amyloid.

So, standard of care, instead of VRD or KRD, if you just have amyloid and you have kidney involvement, we might do CyBorD (cyclophosphamide, bortezomib and dexamethasone [Cytoxan, Velcade and Decadron]). But if your kidneys are okay and I don’t think you’re going to have problems with your heart, there might be other therapies we use. Daratumamab has also been looked at for amyloid, and it seems to work really well. It’s been in relapsed patients, but, of course, there are a lot of clinical trials that a lot of us are participating in for patients with amyloid.

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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