What Symptoms Do Myeloma Patients Experience Post-Transplant?

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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?  

Sarah Frisbie:

Yes, I did.  

Cindy Chmielewski:

And Lynne, you had two. Paula, have you had a transplant? Yes.  And Jill?   

Jill Zitzewitz:

Yes.  

Cindy Chmielewski:

And, Steve, did you have a transplant?  

Cindy Chmielewski:

Melissa?   

Melissa Vaughn:

I actually—I chose not to do the transplant because I plan on doing IVF, actually??  

Cindy Chmielewski:

Okay.   

Melissa Vaughn:

So—I plan on having another baby.  

Cindy Chmielewski:

That's important. Actually, that can be something we talk about in a few minutes.  Let's talk about transplant.  How did you manage some of those severe side effects that comes with stem cell transplantation?  

Steve Simpson:

Some of the what?  Could you repeat that?  

Cindy Chmielewski:

Some of the severe side effects.  You know, I mean, I'm sure you didn't have any?  

Steve Simpson:

You know, that's kind of weird because transplant, and again, it just goes back to everybody reacts different because this is one of those where you sit in your two?hour consult meeting and they drill you with everything you're going to supposedly—you can anticipate, I'll put it that way.  Your time in there, what to expect, this may happen, that may happen.  

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.   

Cindy Chmielewski:

Anyone had like GI issues they had to deal with transplant, fatigue, ways that they?

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.  

Jill Zitzewitz:

I had a lot of problems with nausea, and I found that—I mean, they did give me medication for it, but I really didn't want to eat anything, and I finally found a couple of foods that appealed to me, canned peaches and yogurt and oatmeal, so that's all I ate for about 10 days.  Literally, that's all I ate.  And then I went through this phase of egg sandwiches when I got home.  I just wanted egg sandwiches on toast, you know, fried egg sandwiches.  I'm not sure why.  

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.  

Sarah Frisbie:

I was hoping—I had watched videos and different things of people who had gone through transplants, and I was hoping that I would be one of those people that it wasn't too big of an issue, so I kind of went into it with a hopeful attitude.  But I was really, really sick, and it lasted quite a while.  I did it in the—I stayed in the hospital, so I was there maybe I think about two and a half weeks, but it was just??I could barely keep anything down.  

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.  

Cindy Chmielewski:

I was more like you, Sarah. I tried to keep on top of it because they told me if I kept on top of it with the medications it was best, but I just couldn't shake the nausea and the diarrhea every time I ate.  And odors were a big thing.  There were certain smells that I just couldn't tolerate just smelling those things.  It was strange because some of the things that I'd loved before I had my transplant I couldn't even stand the odor of.  

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?  

Paula Waller:

My transplant was inpatient, and I think nausea was probably the biggest challenge and also mouth sores. Not in my mouth so much but in my throat, and that made eating really difficult.  I survived on popsicles for several days.  

Cindy Chmielewski:

For mouth sores.  Did you do anything else for those mouth sores?  

Paula Waller:

The medical team there gave me pain medicine, but basically just had to kind of wait for them to go away. And I did do the ice before the?and during the melphalan but still got the sores.  

Cindy Chmielewski:

Still got the sores even with the ice.  For those of you that don't know, some of the online support communities encourage you to suck on ice and to eat ice the entire time of your melphalan infusion in hopes of not getting the mouth and throat sores.  And once again it was something I spoke to my doctor about and he said, can't hut so if you want to try it give it a try, so, you know, I did. I didn't get mouth sores, but, Paula, you did, so I guess there is no rhyme or reason for some of the things that we do.  

Jill Zitzewitz:

At my hospital they had us eating popsicles, because they wanted you swallowing it too to keep your throat cold, and so apparently I almost beat the record.  I ate 24 popsicles during that week.  But I didn't have any mouth sores, so it worked for me. 

Lynn Worthen:

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.