Published on September 4, 2020
Managing Fatigue and Sleeplessness While Living with an MPN
Myeloproliferative neoplasm (MPN) patients often can experience fatigue and insomnia due to medications for MPNs. Is there anything that can be done to manage these side effects? Host Andrew Schorr talks to MPN experts from The University of Texas MD Anderson Cancer Center, Dr. Naveen Pemmaraju and Physician Assistants Rodney Haltom and Julie Huynh-Lu to see what they recommend.
This is Part 1 of a 3-part series on MPNs. Watch all segments in the series below:
- Part 2: MPN Treatment: Managing Itching, Sweating and Bone Pain
- Part 3: MPN Side Effects: Weight Gain and Cognitive Issues
This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power and Patient Power is solely responsible for the content.
Transcript | Is There Help for Fatigue and Insomnia from MPN Treatment?
Hello, my friends. Andrew Schorr here with Patient Power. Welcome to our MPN Answers Now program. I'm joining you from the northern part of San Diego County in California. You may be anywhere in the world. I want to welcome our guest experts. We've got a good bit of the MD Anderson MPN team joining us, and I'm going to let them introduce themselves. One is a regular guest, and we have two other guests with us. So, let's start with Dr. Pemmaraju. Who do we have there?
Hey, Andrew and Patient Power. Thanks so much for having me, Dr. Naveen Pemmaraju, Associate Professor, Leukemia, here at MD Anderson. Thank you very much for having me.
Hey. I'm Julie. I'm a Physician Assistant, and I work at MD Anderson in the leukemia department with Dr. Verstovsek, and I'm excited to be here.
Okay, thank you. Rodney?
I'm Rodney Haltom, also a Physician Assistant here at MD Anderson, and I work directly with Dr. Pemmaraju in his clinic.
Julie, I'm going to start with you, okay?
Managing Fatigue from MPN Treatment
As a physician assistant in the MPN area at MD Anderson, world-renowned cancer center... people come from all over... what's the number one thing people are concerned about? I've heard that it's fatigue. Is that right?
Yes, you're absolutely right. That's the number one complaint we hear of a lot, is fatigue. "I'm just not able to do what I used to be able to do. I can't walk as far as I used to be able to walk. I can't work as well as I did before." That's the number one that we see.
Okay. So, Rodney, people could be tired for lots of reasons, so how you do decipher whether it's their MPN or even an effect of the medicine they're taking, or something else?
Well, that's actually where you get into the art of medicine, as we like to call it in our clinic. Every patient is different, so every situation is different, so we go over their entire situation, their list of medications, their blood counts, and we have to listen very closely to what the patient is telling us. There's no one easy answer to that question, but it's very individual to each patient.
Okay. So Dr. Pemmaraju, fatigue is the number one thing, so when, with Rodney and Julie, you kind of zero in on it's the illness, or it's the drug... what do you do about it?
I think this is one of the most important things to bring up, Andrew, is fatigue. It's actually one of the most commonly missed symptoms of the disease, missed by healthcare providers, us. Sometimes patients may not feel empowered enough to bring it up, or it may not come up. "Oh, Doctor, this is regular, older aging," or, "I've had a busy life," but in fact, we now know two things about fatigue, Andrew.
One is that it's not just in our patients with myelofibrosis. Patients with PV and ET let's not leave them out. Dr. Ruben Mesa, Dr. Robyn Scherber, and others have shown that people can have fatigue even in the earlier stages of MPN, even out of proportion to the blood counts. So, fatigue is the number one issue in all MPNs, and number two, even besides treating the underlying disease, there might be other non-pharmacotherapeutic methods that we can help our patients. Dr. Angela Fleischman and others have shown us that diet, lifestyle, looking at cytokines, looking at the interactions of the other medications with the patient with MPN can be of help.
So, I like what Rodney and Julie were saying. We're trying to look at the whole person, the whole patient; both the disease itself, the co-morbidities, the other conditions... if you have sleep apnea or heart disease... and then trying to give a full, reasonable approach to all aspects of the MPN in 2020.
Now, Julie, my hemoglobin... I share this, folks, I'm very public... my hemoglobin is lower. It's 10-point-something, so I guess I'd be classified as anemic, right?
Okay. But yet, I am pushing myself to go bike riding or run... I can't go as far. There was a researcher at MD Anderson... I know it backs up many others... that it's really important for cancer patients to have physical exercise, and it actually is counterintuitive, but it seems to work, that it can fight the fatigue. Is that right?
That is right. It helps to build up energy, but the important thing, as you said... your hemoglobin is 10.4, and let's say you used to be able to bike or run at 12 or 13 hemoglobin. Well, now, you're about two points lower, so the important thing is to push yourself, but slowly; don't go from zero to 100. Take your time if it's something new for you.
Dr. Pemmaraju, you mentioned something a minute ago. You were talking about, let's say, people with early ET and their numbers were good, but yet, they were fatigued. We've had patients who have written in to us and said, "Well, my doctor celebrates my great numbers, but I don't feel well." And so, what do you say to a patient who is kind of almost dissed by the doctor when they have some real quality of life complaints, but the numbers on paper look good?
Right on, Andrew. The first thing I say is, it may be time to find another doctor, and what I mean by that seriously is, it's your body. It's your life, and every patient not only has the right, but has the authority to advocate for themselves. So, what I try to tell our patients, what we all do here at Anderson and other sites, is you shouldn't have to sell yourself to the physician or to the team. MPN is a complex disease, heterogeneous by nature; one patient is different from the next, and as you said brilliantly, the blood counts do not always tell the story.
So, those are on-paper victories, they are fine. But for the patient themselves, we, as doctors, need to listen. We need to stop, we need to pay attention. Interestingly, I've found very often that sometimes what we're excited about may not be what my patient is excited about, so listen to what they're saying. That's great that the platelets are okay, but really take time to listen to the symptoms.
One other thing I want to say, Andrew, as you've always said: knowledge is power. Information is power. My God, how true is that in rare diseases in 2020 and beyond? So, get online, look up information, but don't keep it to yourself. Look it up, talk about it with your doctor, and see if that may be a way to bring up questions on the latest research and findings that may not be in line with what you're hearing in the clinic.
Does MPN Treatment Induce Sleep Problems?
Somebody with ET said, "What about with ET, do sleep problems go along with that?"
Yeah, I mean, sleep problems are actually fairly common not just in MPNs, but obviously in the general population. There are numerous strategies that we can employ to help with sleep. I like to recommend certain... to start not necessarily with the prescription drugs, so like the general over-the-counter supplements... I like to start with a base of melatonin, and then move on from there to maybe some other strategies before maybe getting into certain types of prescription medications.
But again, it's very individualized to the patients, and we have to explore all of the issues in their life, because you start talking to someone about their sleep problems, and then when you really get into the discussion, you realize they're drinking six cups of coffee a day, and then they're saying, "Well, I'm having trouble sleeping. Is it my MPN?" Well, maybe not, maybe you should cut back on the coffee. There's a lot of factors, and we have to discuss it individually with each patient.
For sleep, cramping, all these things... Rodney and I have made many diagnoses of obstructive sleep apnea in our MPN patients, none of whom have the classic symptoms of snoring or particularly overweight, or whatever people learned in the textbooks. So, screen people for sleep studies if it's indicated; refer to sleep specialists. There's a whole another area of sleep disturbance that we're finding in our patients with MPN.
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