What Treatment Options Are Available for Myeloma Patients with Severe Neuropathy?

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Jack Aiello:

Kristen, a person named Donna from Nova Scotia asked, and I'm sure you are asked in a lot.  And that is, I have severe neuropathy from bortezomib (Velcade).  What treatments are there for severe neuropathy?  And anyone can chime in, but I'm guessing you get this question.  

Kristen Carter:

Yeah, that's actually one of the most frequent questions I get.  Especially when starting maintenance because we actually do triple therapy maintenance utilizing Velcade.  And the good thing is now that we have subcutaneous Velcade definitely the neuropathy is a lot less so we don't have to worry about as much.  I always tell my patients that we need to know about neuropathy before it gets grade 3.  If you have grade 3 neuropathy I did not do my job.  

We need to dose modify early. We need to start drugs like gabapentin or pregabalin (Lyrica).  I've used Cymbalta.  There's several different ways to treat peripheral neuropathy, but the main big thing is dose modification and dose interruption if you have a grade 2 or more neuropathy.  That's when you start to need to think about dose modification.  We do not want it to get to painful neuropathy and continue treatment.  

And then you look at the clinical research on the newer drugs like carfilzomib (Kyprolis) or ixazomib (Ninlaro) that does have less—less neuropathy associated with those drugs, so I've definitely used Kyprolis when someone had neuropathy with Velcade with not having further neuropathic symptoms with utilizing that drug. There's lots of other options out there that does not have the associated neuropathy symptoms.  

But the big takeaway would be let's not let it get to grade 3 before we're talking about neuropathy. So actually every visit, we talk about neuropathy at every visit.  I ask that question at every visit, so preemptively educating the patient that these are the symptoms that you may develop, and also letting the patient know, hey, let me know if you're having symptoms.  

Jack Aiello:

Doctors Krishnan and Richter, any added insights in terms of how to fix bad neuropathy?  And, by the way, if you do have any of that will definitely fix it, I will be in your office tomorrow.  

Dr. Krishnan:

Absolutely.  

Dr. Richter:

I think there's a few—the number one thing that Kristen brought up, and this is literally the biggest issue, is open dialogue with your care team.  That is—she is 100 percent correct.  It is a lot easier to prevent than to treat.  Unfortunately, the drugs that we utilize do not work in everyone. The other modalities that could be tried, I've had some success with duloxetine HCL (Cymbalta), which she mentioned, also some of the tricyclic antidepressants drugs, like amitriptyline, nortriptyline may offer some help there.  

But, again, this is really all about trying to prevent it and picking the right drugs and the right dosage.  There are some newer??we're starting to work on some clinical trials here for some novel approaches, but nothing as a cure?all just yet.  

Jack Aiello:

I've had a few patients tell me that maybe acupuncture has helped them, cocoa butter has helped them, acupressure, acupuncture, as I said.  But as you say there's nothing for everyone, and it can be really debilitating if it gets too bad.  

Dr. Richter:

There's one other—and again, neuropathy can come in a variety of ways.  There's a numbness but there's also a pain.  For people who have extreme pain there are compounding pharmacies that can a make certain combinations of lidocaine and some other medications that may help numb it.  The other one—and I know this sounds very extreme and not all places do this—there are various studies looking at compounds of ketamine.  And I know this sounds crazy, ketamine, which is also known as Special K, which is used in a variety of other nonclinical settings. There's been some conflicting studies looking at the use of ketamine in peripheral sensory neuropathy, and I've had a few success stories in patients with severely refractory peripheral neuropathy working together with our pain management colleagues to compound the right dosage, but it can be tricky to use.  

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.