A Myeloma Patient Café: Best Practices for Coping With Side Effects and Symptoms

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Topics include: Patient Stories

How does multiple myeloma affect the body? What are common side effects from treatment? During this Myeloma Patient Café, a panel of patients living with multiple myeloma, including Patient Power host Cynthia Chmielewski, Steven Simpson, Lynn Worthen, Paula Waller, Melissa Vaughn, Jill Zitzewitz and Sarah Frisbie discuss side effects and symptoms they’ve experienced and tips to help others find relief from their condition and treatment. The patient panel shares advice for managing neuropathy, fatigue, skin issues, bone pain and more. Watch now to learn practical strategies for symptom control. 

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

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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.

Today we're going to be discussing ways of coping with and managing side effects from treatment and some of our symptoms from multiple myeloma.  Before we begin I want to make sure that you understand that this is in no way going to replace your conversations that you have with your physicians, but you could use this as a springboard to start some of those conversations.  

I am delighted that today we're going to be joined by other myeloma patients who have found some successful ways of coping with their shot side effects and are willing to share.  So before we get started, let's just introduce ourselves and tell us a little bit about yourself, where you live, when you were diagnosed, and maybe one or two of the two most challenging side effects.  

My name is Cindy Chmielewski.  I live in Laurenceville, New Jersey, and I was diagnosed with multiple myeloma in July of 2008.  And some of the challenging side effects that I feel the most frustrated about are the fatigue that I have and chemo brain.  And why don't we go next to Sarah.  

I think—I don't know how everybody else had it, but they gave me 40 milligrams dexamethasone (Decadron) a day four days and stuff like that, and it was interesting to negotiate that.  The lack of sleep, the retention of water.  I gained 17 pounds in four days, you know, all that kind of thing.  But those passed after a while when we stopped with the extreme level of dexamethasone and I got it out of my system.  But pretty much the routine kind of side effects that people have.  

Side effects, I'm going to say the worst ones are obviously neuropathy was a big one.  Syncope was probably the biggest one I had to overcome, and then the digestive issue, I feel your pain on that one.  That's just not real enjoyable, but we're getting there.  So those are the things that—that's just a few of the many we have, but those are probably some of the big ones for me.   

Melissa Vaughn:

Okay.  Want me to go ahead?   

Just to begin with, were you surprised by the side effects you were experiencing, or were you prepared to deal with them? Anybody want to…

So, yeah, I would hope that most everybody is surprised for the most part because you don't know what to expect.  You don't know what's coming from any of it.  They can talk about the chemo brain, which, I don't know about the rest of you but when I heard that I kind of laughed. Well, I don't laugh anymore because it's sad but it's there.  So from my standpoint, yeah, I think they're all kind of unexpected.  The biggest one probably aside from those was the heart damage that I had that was the beginning of the syncope from the start where the left ventricle, the damage down to 35 percent, and so we had to kind of fix that problem first and then go from there, so.   

We keep on hearing about neuropathy.  Has anyone found ways of dealing with or managing their neuropathy?  

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 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.  

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.  

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 2, 2018