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Myeloma Remission: Managing Life After Treatment

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Published on September 29, 2016

Why do energy levels fluctuate even in remission? Audience member, Don, asks UAMS Myeloma Institute Dr. Frits van Rhee, Dr. Faith Davies and Dr. Gareth Morgan, this question. While the question may baffle family and friends, the experts list several reasons why vacillating levels of energy are to be expected. Listen as they explain fatigue and share advice for myeloma patients.

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Transcript | Myeloma Remission: Managing Life After Treatment

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.

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. 

Don:

My name is Don. I’m from Batesville, Arkansas. I was diagnosed with multiple myeloma in March of 2012. And I’ve been in remission for about a year-and-a-half. I have more than one question for you. 1) I think I’m hoping that others here can relate with this, since I’ve been in remission, you would think, if you’re told in remission, then, your days are going to all be pretty good. But my experience is one day I will have sufficient energy to do the things I want to do, and the next day I might not feel like doing anything except sitting around.

And so I try to explain that to my wife and others who love me and care about me. So I just wanted to kind of get a response from you, since I’m in remission, why is it that one day I have pretty good energy and the next day I don’t? 

Andrew Schorr:                  

Okay. Let’s start with that one. One of the doctors want to comment on that, or whomever?

Dr. van Rhee:      

Part of the issues may be related to current drugs that you are receiving, which certainly need to be looked at. You’re also dealing with some of the aftereffects possibly of more intensive therapy. And people do experience those changes. For instance, a lot of patients complain that their memory is not as good, lack of energy is one.

There’s also adjustment to having the diagnosis of myeloma and living with uncertainty. And it also causes uncertainty and psychological stress. So there are a number of reasons why your energy levels may fluctuate and why you’re not feeling quite right. And I think all of these need to be looked at.

Andrew Schorr:                  

Any other comment?

Dr. Davies:            

So I think, sometimes, we also forget the aftereffects of being on treatment and the fact that, if you think about it, when you were first diagnosed, most people are probably really unwell. We then give further treatment. And so as a physical fitness being, by the time you’ve gone through all of that, you’re really quite weak. And I often describe it like training for a marathon. You’ve got to slowly but surely get the fitness levels back up.

And they may not go back up to 100 percent. But, often, it’s a slow, long job. It’s not a spring. And, sometimes, you can then look back six months and think, actually, yeah, I’m much better than I was six months ago. And so it is a long, slow job. And I can see the team nodding who have been through it.

Dr. Morgan:         

I’d just like to comment on the role of education. So it’s a struggle to get everybody up to speed. And the Internet is, on one level, a great tool. But if you always read something that says myeloma is an incurable disease, full stop, and then, you find a site that says 2.5 years that weighs heavily on people’s backs. And I’d like to kind of say it’s quite clear that 2.5 years is not correct and that there are people who do really very well long term. And, actually, getting people to truly believe that the disease can be gone for decades is a really, really important task.

Andrew Schorr:                  

And you know the thing they say on weight loss or whatever, and they have it on a commercial, and they say your results may vary, and I think so not everybody is a straight line. And I’ve seen that, certainly, with my condition, chronic lymphocytic leukemia, that people get to remission, but they experience it differently. And what you’re saying is experiencing it differently sometimes on different days. And I understand that. And you want to get an upward thing. But it sounds like that’s part of the dialogue. Let’s take your second question. 

Don:      

Well, let me say first that I’m a man of faith as well. And so I haven’t worried a day about my diagnosis. And I know the end of the story.

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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