What Symptoms Do Myeloma Patients Experience Post-Transplant?

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Topics include: Treatment and Understanding

What are common side effects from a stem cell transplant? How long does it take to recover? During this Myeloma Patient Café, a panel of multiple myeloma patients including, Cynthia Chmielewski, Steve Simpson, Lynn Worthen, Paula Waller, Jill Zitzewitz and Sarah Frisbie, discuss the symptom burden they experienced after a transplant and share some management strategies to help others live well during and after treatment. What can patients eat post-transplant? The panel also explains how their diet changed while dealing with side effects like nausea. Watch now to learn more.

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.

Cindy Chmielewski:

Let's get into these GI issues and nausea.  It sounded like something that people are experiencing.  I know the most times I had that was during my stem cell transplant, so why don't we maybe talk about transplant first and then maybe talking about ongoing and maintenance therapy later on.  Ways that you got through your??how many people have had transplant first?  

Melissa Vaughn:

So—I plan on having another baby.  

And I'll be honest, this is one of the most surreal things I've ever seen because the eight or nine hours to take out your own stem cells, that was probably worse than the actual two days of the transplant process because that's, you know, you've got to sit there. You don't get to go anywhere.   

Transplant itself was, I said surreal for me.  It was, you know, they come in 24 hours from the time you had the chemo the day before, and had no issues from that.  I sat there in total for an entire day.  They came in and within 12, 15 minutes you're done.  And I looked at my hematologist, I said, really, we're done?  That's it?  He goes, yeah.  I said, okay. You know, two and a half, three hours later I'm walking out of the hospital—or out of the cancer center, excuse me, and I never went back until day 98.   

So side effect?wise the worse thing was, what, five days later when your white count goes down to zero and the four buses run you over all at once, you know, you can't prep for that. So from my standpoint that was probably the worst of it right there, just that normal, okay, you watch your white blood count, have fun now because you're going to be out of it and go to it. So side effect?wise I really didn't have anything.  

I was very fortunate through the whole process again, number one, to be able to leave that same day, because nothing really changed physically for me at all.  I just kind of sat that and I'm like, okay, Dr. Kelly came in I said, okay, can I go home?  You know I live 12 minutes, 15 minutes away.  I have 24?hour care if I need it, and everybody in this hospital is what, they're sick, right?  So how about we just go home and we deal with it, and it was fine.   

I left, and I felt perfectly fine for the first three or four days like nothing happened, but then once your count drops it's kind of like, whoa, here we go, but that was about the worst. Other than appetite, but that's part of the process.  So I guess I got lucky from that standpoint.  Very lucky.  

And that's where I stress so hard with people that everybody reacts different.  Nobody reacts the same, and as we do this and we get on the social media pages of people asking questions they got to understand that everybody is different.  And that's why I like these because you can hear all the different things that go on. Again, I feel very fortunate that I've been able to kind of just glide through this whole process with not a lot of issues to deal with, so.   

Lynn Worthen:

I learned to pay attention to what the doctors said.  They gave me a sheet of paper and they said take these medications in the morning and these in the afternoon and all that, and I looked at it where it said laxatives and stool softeners, and I said I'm not going to become dependent on those things. I'll make it just fine otherwise. Well, two days later I was asking at 8 p.m. what we could do about the problem I created.  

And I learned to pay attention to what they said because I had no background to understand how steroids and chemo—one lady she called it the concrete maker, I mean, how it could really create issues for you.  So I learned to pay attention and to know that they've been there before and they know a lot more than I do about this sort of thing.  And that helped me all the way through.  

But, anyway, I just learned to negotiate it by doing exactly what they said about use of laxative, use of stool softener, all that kind of stuff so that you didn't create a much bigger issue.  

But I didn't really worry about not getting all of the nutrition I needed just to figure out what I could tolerate, and figuring that out and just going with helped a lot.  

And then I also walked every day.  When I was in the hospital I forced myself to walk up and down the hallway carrying my IV pole, dancing with my IV.  But—and then at home I paced my driveway outside, tried to get a mile in every day, but it would be in like little blocks.  Maybe I can do a quarter-mile and then after I rested I'd do a little more. And that really helped I think.  I got my energy back a lot quicker.  

But I did eventually—because in order to leave I had to start figuring out how to eat.  But I did find some things like you said that I could keep down.  And so I developed this love of Wendy's frosties and I would just eat those. Because I needed calories, you know, and same as you, Jill, I wasn't worried about nutrition.  I just needed to keep something down.  So I had frosties for like two weeks I think, pretty much lived on that.  But I was—I had so much nausea, and they gave me stuff too for it, but it just seemed like nothing would get rid of it.  So that was my experience.  

And you had frosties, I had custard ice cream.  That was the thing that got me through, you know, at least being able to eat because I was too in the hospital and they wouldn't let me out of the hospital until I showed them I was able to eat something.  So everyone is so different.  

Paula, how was your transplant experience?  

The nurses told us to eat ice two hours before until two hours afterwards, and being who I am I decided if it worked that way I would just start when I got up in the morning and I would eat it until I went to bed at night, and it worked okay for me. Got water in me and also it kept my mouth and throat cold so I didn't have problems with it.  But I was around people who have had some severe problems like all of you said, and it can't be a very pleasant experience.  

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 26, 2018