Myeloma Patient Cafe: How Are Myeloma Patients Managing Neuropathy?

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Topics include: Patient Stories

How can multiple myeloma patients find relief from the painful tingling and numbness caused by neuropathy? During this Myeloma Patient Café, a patient panel including Patient Power host and advocate Cynthia Chmielewski, Lynn Worthen, Paula Waller, Melissa Vaughn, Jill Zitzewitz, Sarah Frisbie and Steve Simpson, share advice from their own treatment journeys to help others cope with neuropathy. Watch now to learn more about symptom management strategies for myeloma.

Produced by Patient Power. We thank Celgene Corporation, Genentech, Helsinn and Novartis for their support.

 

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Transcript

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.

Cindy Chmielewski:

Has anyone found ways of dealing with or managing their neuropathy?   

Steve Simpson:

Well, I'll be honest with you.  With mine, I'm on 2,700 milligrams of gabapentin (Neurontin) a day, which is about as much as you wanted to take because that's nine pills a day.  Plus I'm on duloxetine (Cymbalta), which is an additional drug for that, but in that I had to take away my amitriptyline (Elavil) for sleeping at night because those two contradict each other.   

And then we just recently in my last thing, it wasn't yesterday, it was the last month going in for my monthly we dropped my dexamethasone (Decadron) down because that's another factor in neuropathy.  My hematologist just decided to take the once-a-week dex and cut it down and see what that does, and that has helped a little bit.  But even that sometimes isn't enough because my feet are continually numb on the bottom.  I refuse to walk around barefoot anywhere in the house.  I mean, it's just—there's little things that drive you nuts and you can manage to a point, but that's about as far as it goes.  

Cindy Chmielewski:

We talked about some drugs like gabapentin.  

Steve Simpson:

Gabapentin, yep.  

Cindy Chmielewski:

Who did you work with with those drugs?  Was it your oncologist, hematologist?   

Steve Simpson:

Yeah, all of this is through my hematologist, correct.  Everything I've done drug-wise related to that part of it where it's related under that section of the cancer is through my hematologist.  I have some other things we do obviously through cardiology or pulmonary and those types of things, but that particular one was with the hematologist, correct.  

Cindy Chmielewski:

Anybody else have ways that they worked with their neuropathy?  

Jill Zitzewitz:

I think for me my neuropathy was much worse before I was diagnosed, and actually it cleared some, which was surprising to me because that was supposed to be a huge side effects of the medications that we take so I was expecting it to just get worse and worse, but that wasn't a side effect for me.  It was more of a myeloma issue, so.

Cindy Chmielewski:

So as your myeloma was getting better your neuropathy was getting low.  

Jill Zitzewitz:

Yes.   

Cindy Chmielewski:

Anybody else about neuropathy?  

Melissa Vaughn:

Exercise, exercise helps me most.   

Cindy Chmielewski:

Yeah.  I was told a long time ago that maybe a vitamin B6 type of supplement may help with neuropathy, so I asked my doctor and he said it couldn't hurt so I've been taking it.  I don't know if it's helping, but it's not hurting according to him, so that's something else maybe that you could consider.  Any other body doing anything else there?   

Paula Waller:

I take supplements.  Actually, I have three things that I do for neuropathy.  My neuropathy isn't terrible, it's more bothersome, but I do take a B complex vitamin which my doctor recommended soon after I was diagnosed.   

I was stunned when my feet went numb within a week of my first Velcade shots, and I began researching, and one of the things I found was people were using acupuncture.  And I was skeptical but decided to give it a try, and it has really helped a lot.  What I find is I need to keep on a somewhat regular schedule with that.  If I go a few months without it then the neuropathy worsens.   

The other thing, someone said exercise, and I found that Dana-Farber's website has an online health library with a wonderful slide show of very simple exercises that can be done for feet, legs and fingers, and again something that I find I need to keep up with regularly for it to really help, but if I do it does help. 

Cindy Chmielewski:

The one thing about neuropathy I didn't hear anyone mention was I know sometimes you can dose reduce.  You could take maybe a smaller dose.  That's something that you may be able to discuss with your physician if that's something they're willing to try.  Or sometimes you can take the full dose but spread it out a little bit longer, you know.  Instead of twice a week getting a treatment once a week or one every other week.   

So I think the important thing is especially with some of these side effects that you experience when you're taking some of the medications is that open communication with your physician, telling them exactly what is bothering you and how it's bothering you.  Because together you might be able to make some time of decision so that you don't have to live with the pain, that there might be some way to reduce it or to manage it in the best way possible.  

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 October 29, 2018