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Understanding and Controlling MPN Symptoms

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Published on February 16, 2016

Can symptoms like fatigue and headache be controlled for the myeloproliferative neoplasm (MPN) patient?  Dr. Rami Komrokji of Moffitt Cancer Center and Jane Williams, from the Department of Integrative Medicine at MD Anderson Cancer Center discuss how activity, phlebotomy and communication can help alleviate these symptoms.  Listen as they also stress open communication with your healthcare team as the key to understanding your disease and receiving the proper care.

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Transcript | Understanding and Controlling MPN Symptoms

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.          

Andrew Schorr:   

So I understand that even if you’re having trouble getting out of bed, or you’re just dog tired, even then exercise, now it’s been studied, for a cancer patient is worthwhile.  Not run a marathon maybe, although here is a lady who runs half-marathons.  Whatever you can do.  Is that right?

Jane Williams:   

It is absolutely right.  And indeed, we’re all very different. And some of us without the myeloproliferative disorders can run marathons or not run marathons. We’re all different. But, yes, we’ve done a lot of research and a lot of studies on physical activity and that it really can help fight fatigue. Because we’re all different, it doesn’t mean there’s one prescription for all of you.  You all have different abilities, different levels of activity. What we believe is that any activity is better than none. For some patients, it may be all you can do is sit on the side of the bed and march for a few minutes.

It may be that all you can do is get up and walk for five minutes and hopefully be able to do that a few times per day.  For others of you, you may be able to run a half-marathon. But we do work with patients on helping them design some kind of activity that is right for you within your capabilities during therapy. It’s not so much about increasing your stamina or your fitness.

It’s about maintaining what you have now so that you can continue with your therapy. But absolutely, some physical activity is better than none. 

Andrew Schorr:                  

Okay.  Dr. Komrokji, I’ve got to ask you a question.  I’ve heard people who have these super high platelets, and they have terrible headaches. Sandra has it. Anybody else have/had headaches or fuzzy thinking from PV and all that?  A number of people. And then I’ve heard it said, some of my friends in London, we did an event there, somebody had phlebotomy, and those went away just from the phlebotomy. What’s going on where you have headache and fuzzy thinking just because of the high platelets? And how does phlebotomy help?

Dr. Komrokji:     

Right. So I think both are correct. Obviously, the phlebotomy helps with the increased hemoglobin, not much with the platelets.  But part of this is like the sluggish circulation.

So obviously, the viscosity of the blood increases when those counts are higher.  Blood circulation is sluggish. And part of it is also probably from the inflammation that sets or what we call the cytokine, which are proteins, inflammatory proteins that set many of those symptoms.  So when you do phlebotomy, and you bring the hemoglobin down, you are almost diluting the blood again and then helping with the circulation.  With the platelets, obviously, when you use agents to control the platelets down, the symptoms improve.

And then sometimes, those are very difficult in the clinic for physicians to get a hand around, because many of those are a little bit subjective like doctors always deal with data and numbers.  Like with fatigue, dizziness, those are a little bit more subjective sometimes for the physicians to get their hands around.  And sometimes, they are not described very well in the classical medical textbooks. It really needs to see several patients to start saying there is definitely a correlation between the platelets being high and the patient complaining of headache.   

So it takes that thing to develop. And I know how much we do really a good job sometimes when we are seeing the patients and assessing those symptoms because fatigue, how do you really assess fatigue like symptoms like I’m talking about? And, obviously, on trials, there are all those calls that patient fails every visit that, most of the time, we don’t do outside of clinical trials. So there is some objectivity on how we assess those things.  Something you mentioned when the platelets are high also like people think the clotting risk is higher. But, actually, the platelets go very high.

Sometimes the bleeding risk gets higher.  So if somebody has a very severe headache that’s not just a usual headache, something like, suddenly, this is the worst headache they had.  We always in the back of our minds are thinking is this like a bleeding headache. But those are usually severe and not typical. They usually have other symptoms with them. 

 

Andrew Schorr:                  

So there are various symptoms people have. Now, I want to ask you, honestly, maybe the ladies can answer this, because I think it’s sort of a men thing.

I think sometimes the doctor says or the nurse, “How are you doing?” And you answer, and you say, “Fine.”  Ladies, do you think that, sometimes, if you’re here, let’s say, with a male patient that they say fine when they’re really not?  Anybody feel that way? You’re nodding your head.  They’re kind of being discrete about that.  Okay. So, Jane, the importance of communicating how you’re doing to the nurse who can be your advocate with the doctor or the nurse practitioner, you have your own patients as well, to really leveling, particularly about these quality-of-life things.  Yes, I know I’m taking a medicine that’s fighting my cancer. 

But I’m really tired. I have terrible headaches like you had your dose changed, etc.  Communication is really important, right?

Jane Williams:   

Well, it absolutely is. And this is not about whether or not we’re going to like you or respect you, because you’re telling us you’re doing okay.  This is about us being able to help you.

And we can only help you when you tell us what you need help with. What I do is I try to ask some questions to help me get a little more information from you. And I may ask you in the beginning how are you.  And if you tell me you’re fine, I’ll say do you have any fatigue? Do you have headaches? Do you have itching and some of those other things? And hopefully, at that point, you’ll say, well, yeah, a little. And then I may ask you a little bit more about your fatigue like what can you do or how does your fatigue limit you? What do you feel like you’re not able to do? And that helps us be able to help 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.