Cognitive Issues: Managing Common MPN Symptoms

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Topics include: Treatments and Understanding

Can a myeloproliferative neoplasm (MPN) condition cause cognitive decline? What exactly triggers it? Dr. Naval Daver, from The University of Texas MD Anderson, breaks down MPN symptoms and discusses the biological root of itching, night sweats, fatigue, blurred vision, headaches and dizziness. Dr. Daver also describes other symptoms patients may experience from the disease or side effects from treatment. Additionally, Dr. Brandon McMahon and Lindsey Lyle, from the University of Colorado Anschutz Medical Campus, explain MPN symptoms from “head to toe” starting with depression, and share tips for communicating with a healthcare team to initiate symptom management. Watch now to learn more.

Produced in partnership with the University of Colorado Anschutz Medical Campus. Sponsored by Incyte Corporation.

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Transcript

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:             

First of all, Dr. Daver, related to the—first of all, the symptoms, and then maybe side effect management, as well. So, we’ve talked about fatigue. I understand with some of the conditions you can have itching. You have ticked off some of these before. Maybe if your platelets, or others, you can get headaches, and I’ve met people with that. 

Now what about this one on the screen, cognitive Issues? So, can your blood being out of whack have you having issues—you can’t remember things?

Dr. Daver:                     

Well, it’s more of a kind of generalized cognitive decline that a lot of patients will complain about. We don’t really understand clearly, what exactly is triggering that. So, we do know that the cytokine levels—cytokines are a kind of enzyme that are produced in your body and these are overproduced in patients with both PV and myelofibrosis.  

Some of these cytokines are causing itching, night sweats, some of those symptoms, and we think they might also be playing some role in making people feel more lethargic, tired, fatigued. Also, some patients have very high red cell counts and that can cause overall sluggishness of blood flow, which could then cause decreased flow to your eyes or brain, and some people have blurring of vision, headaches, dizziness, that kind of feelings. 

So, it’s not really clearly understood, but many patients will tell you later, after they start the medication and their counts improve, that they realized that they actually were having cognitive decline, because now they feel so much better; more alert, you know, more active, can concentrate better, things like that. 

So, I think those are the common symptoms, I mean, we get all kinds of vague symptoms, some people have a lot of abdominal distension, abdominal pain, it could be from splenomegaly, but even without splenomegaly we see. Another common one is early satiety, meaning they are not able to eat as much. They eat a little bit and then they feel full, so they try to eat multiple small meals, and this may be from the spleen, but also some of the cytokines.  

We see bone pains. We see headaches, dizziness, you know, it can be a myriad of symptoms which is why, like we were discussing, it’s hard to know, because a lot of these can be symptoms associated with fatigue, overwork, common things, extra caffeine, so that’s why it’s sometimes hard to make this diagnosis for primary care doctors, and it takes time.

Andrew Schorr:            

So, Dr. McMahon, somebody comes to you and you say, “How’re you doing?” And they tick off maybe they’re having sleep problems or who knows what. How do you decipher if it’s from their condition, from their medicine, or from some other condition? How do you do that? 

Dr. McMahon:              

It can be very difficult. It can be very difficult. You don’t know if it’s from the underlying disease itself or from the treatment, like you said, and sometimes especially because a lot of these symptoms that you have with MPNs, we say constitutional, or kinda like head-to-toe kinda symptoms. 

Sometimes it could be more of a problem coping. You’re worried about paying the bills, or you’re worried about overburdening your family, so it can be a little bit difficult to figure out what exactly is driving the symptom. And that’s why it’s nice to have people like Bryn and Sommer. If someone has—they’re losing weight, and it’s because they have early satiety, you can call on them to help out. 

Or if they’re having trouble with depression and a lot of it may not necessarily be something they need pharmacological therapy for, they just may need help with strategies to cope with it, and deal with their family, having Bryn come in and talk to them. So, it’s always important, whatever symptoms you’re having, to let us know so we can try to help tease out exactly the best way to approach it 

Andrew Schorr:            

So, here’s a male problem. The doctor says, “How’re you doing?” And our wives or our partners know we have lots of stuff that’s been bugging us. The doctor says, “How’re you doing?” Lindsey says, “How are you doing?” 

“Fine.” Right? We do that. So, it is really a good idea, first of all, for us men to speak up and really talk about what’s going on, and if we’re hesitant, for our partners, I think they all invite you to come, children, to come and say, “You know, Mom has been complaining about this.” “Dad has been complaining about this. Maybe they don’t think it’s a big deal, but we wanna put it out here.” Right?

Lindsey Lyle:                

Right. Correct.

Andrew Schorr:            

Don’t be shy.

Lindsey Lyle:                

No, no. Sometimes the patients will just say, “Yes, everything’s great.” Right? Because you get to the doctor and you get a little bit nervous or maybe you even forget. So, it’s good to bring your partner in crime with you, who can kind of rat you out in a good way, so that we know what exactly is happening. Yeah, absolutely.

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