Decoding MPN Symptoms and Treatment Side Effects

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Topics include: Living With Myeloloproliferative Neoplasms

Myeloproliferative neoplasms (MPNs) and its’ treatments are associated with a variety of side effects that can be quality of life and function-limiting. How can people differentiate between disease symptoms and treatment side effects? How can patients then find relief? In this Partners program, a panel of patients and an MPN specialist describe the MPN symptom burden, common treatment side effects and ways to manage them. Patient advocates Andi Malitz and Sue Waite discuss the impact of their condition on day-to-day life, while Dr. Robyn Scherber, from the Mays Cancer Center at UT Health San Antonio MD Anderson, offers an expert perspective on assessing and treating symptoms and side effects. 

Symptom Management form: https://www.voicesofmpn.com/pdf/mpn-symptoms-form.pdf
Academic journal articlehttp://www.bloodjournal.org/content/118/2/401?sso-checked=true

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

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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:

Hello, and welcome to Patient Power. I’m Andrew Schorr. And welcome to our Partner’s program for people living with an MPN, myeloproliferative neoplasm. I’m one, since 2011, really, with myelofibrosis. So, I’m a patient. But we’re joined by two other patients, and also with a leading specialist in MPNs. First, I wanna go to our patients and to Chicago. Andi Malitz has been with us before. Andi, you’ve been living with ET for a number of years. What are some of the symptoms that you’ve dealt with with ET that have been troubling you? Just rattle them off.

Andi Malitz:     

Fatigue. Extreme fatigue. And sweating. Not only night sweats, but increased and constant day sweats too. I also have some hand tingling from time to time. And also, one of the things that I was experiencing, because of too high of a dose of hydroxyurea, were extreme mouth sores. So, those are the main things.

Andrew Schorr:           

Okay. Well, we’re talking in this program about symptoms and also side effects, and she’s mentioned symptoms. Side effects—let’s go to Willoughby, Ohio and Sue Waite, who has been living for a number of years now with myelofibrosis, like me. Sue, welcome to Patient Power. How about symptoms for you? What have you experiences along the way?

Sue Waite:       

Immediately was my spleen pain that actually brought me to the doctor. But I was exhausted all the time, itchiness that drove you crazy, night sweats and day sweats, and some bone pain.

Andrew Schorr:           

Okay. So, someone who knows a lot about this, seen many patients, and trying to help physicians around the world know how to deal with this is Dr. Robyn Scherber. And she joins us from San Antonio, Texas, where she’s Assistant Professor of Medicine, Department of Hematology and Oncology, the Mays Cancer Center at UT Health in San Antonio. Robyn, thanks for being back with us on Patient Power.

Dr. Scherber:   

It’s a pleasure to be here.

Andrew Schorr:           

Okay, Robyn. So, first of all, these situations that Andi and Sue have just mentioned, you’ve heard about them before, right? You hear about them probably too often.

Dr. Scherber:   

Yeah, they’re extremely common. We look at fatigue alone, and over 90% of patients with MPNs deal with fatigue that’s often quality-of-life limiting, function limiting. They have a hard time being around family and friends and loved ones. There’s a lot of other symptoms too that patients experience that we didn’t actually mention so far. So, especially headaches, concentration difficulties, problems sleeping. And one of the most common things that we don’t like to talk about as clinicians I think enough, because it’s a difficult conversation: sexual difficulties.

Andrew Schorr:           

Okay. Now, you and Dr. Mesa there, you’ve worked on sort of a scoring system to help doctors around the world. So, tell us about that, this sort of – what the name of that scoring system is, to help doctors kind of quantitatively look at what a patient is dealing with.

Dr. Scherber:   

Yeah, so, back in 2007, my long-term mentor, who I’ve worked with now for over a decade, Dr. Reuben Mesa, was one of the first ones to actually look at symptom burden in MPN patients. And so, he actually published those results. But based on those, he created an initial symptom assessment form called the MFSAF, myelofibrosis symptom assessment form, that looks specifically at symptoms that were some of the most common symptoms for myelofibrosis.

I started working with him around 2008, 2009. And then 2011, we validated the myeloproliferative neoplasm symptom assessment form, or MPNSAF. And then we condensed it down to just the ten most representative and kind of pertinent symptoms, and it was called the MPN10. But we also call it—and it’s a bit of a mouthful—the myeloproliferative neoplasm symptom assessment form total symptom score, also called sometimes the TSS score.

Andrew Schorr:           

Okay. So, this is a way that someone can go to the doctor, and they can describe what they’re dealing with, and it can kinda be scored. And then that can be a guide to what to do about it. 

Dr. Scherber:   

Right. What’s unique about these scoring systems is, it puts basically the report in the hands of the patient. It’s called the patient-reported outcome, or they also call them pro measures, P – R – O. This allows the patient firsthand to pretty much tell us, in an objective way, how they’re feeling.

With the MPN10, though, scoring is pretty easy. We score each of ten items on a 0 to 10 scale, so, a total score of up to 100. And we’ve done a lot of different fancy analysis and looked at what are some of the most common scores, what are the lower scores, the higher scores. And so, just based on looking at your scores and then kind of objectively saying what your symptom burden is, and then most importantly, how it changes over time, an objective measure to actually see if you’re responding to therapy, or is therapy worsening the symptoms that you have. 

Andrew Schorr:           

Okay. So, let’s talk about this. So, you mentioned fatigue. So, first of all, Andi, fatigue for you, did it keep you from doing things?

Andi Malitz:     

Oh, yes. Absolutely. You know, it’s interesting because other things were happening right before that in my life from a surgical perspective. And it was hard for me to discern right away, and for quite some time after that, what exactly was it about ET versus about a—oh goodness—partial hysterectomy I had had in late 2002 and did not go on hormones. So, the doctor mentioned some things that could go across all kinds of different things, especially for a 45, 46-year-old woman. So. But yes, to answer your question. The fatigue was excruciating, and especially in a very fast-paced corporate position where I was doing a ton of traveling, and it was very difficult to keep up.

Andrew Schorr:           

All right. And Sue, you mentioned itching. And I’ve wondered about that for myself sometimes. And you said it was just horrible.

Sue Waite:       

I used to ask other people, did they feel this? It was like this excruciating thing, and I couldn’t understand nobody else going through it. And it was years before I was diagnosed. I don’t know why I never really brought it up to my doctor. But there were times you just would wanna rip your hands off, it was so painful.

Andrew Schorr:           

Dr. Scherber, so, let’s first of all define for people, what’s the difference between a symptom and a side effect?

Dr. Scherber:   

All right. So, symptoms are really something, when we look at different types of MPNs, that we think are due to the disease itself. We know that there’s a lot of inflammation with MPNs, so, that could be a source of symptoms. We know there can be blood clots that cause symptoms, disease progression, anemia, and organ dysfunction. So, things like a very large spleen that can cause bad problems with weight loss, or getting full very fast, or abdominal pain, or constipation.

That’s very different than a side effect. And really, a lot of the way we can try to help to see the difference is in the timeline of when the symptom developed. But if I start hydroxyurea, and all of a sudden I have bad nausea, just not feeling well, acid reflux, or mouth sores and ulcers that we mentioned, or even skin ulcers, that gets me thinking, you know what? I don’t think this is due to the disease itself. I think this might be due to the medication.

Andrew Schorr:           

Okay. All right. So, that—but then Andi brought up something else is, some people have other conditions, or they’ve had surgery, like she had. So, how do you know when to attribute it to not just the medicine, but let’s say to the disease, to the MPN? How do you know that?

Dr. Scherber:   

Yeah. The timeline is always very helpful to know in clinic visits. So, a lot of times, I’ll actually try to write in my notes everything in sequential timeline. And I’d like to know specifically when the different symptoms occurred. Things like you mentioned, with the night sweats or fatigue, sometimes—especially in the setting of something like your hysterectomy, when you’re dealing with a whole bunch of hormonal issues—can be very difficult to pick out. But knowing when things happened can help.

The other thing that can really help are laboratory tests. So, things like checking for hormone levels, or checking to see if a thyroid function is low, or if maybe someone’s low on vitamin D. I had someone just in my office today that was complaining of horrible 10-out-of-10 fatigue. So, we checked a whole bunch of things. Again, we checked thyroid function. I checked cortisol levels, vitamin D, B12, folate, iron levels. There are a lot of different things we can kinda do, depending on what the actual symptom is.

But I think finding a provider that’s willing to really work with you, and that just doesn’t pretty much say, “Well, it’s your MPN.” It very well might be a bigger picture. And that’s worth looking at, especially when it’s your life. I mean, it’s your functioning.

One of the things—I go on a bit of a rant about this—but what our data showed is that quality of life is one of the most important things for MPN patients. And symptoms are a huge contributor or detractor for quality of life. And that making quality of life better in the long term can actually help with overall survival through the effect of improving functioning and time with loved ones and just enjoyed experiences. It makes us eager to live. It makes us continue to function better, which ultimately makes our body better.

Andrew Schorr:           

Well, that’s what health is all about, for sure, is so we can live that way. I’ve been very fortunate with my myelofibrosis in that—I’ve been really lucky. Knock on wood. I hope it stays that way. Sue, believe me, I pay attention to what you’ve been through, where you’ve had transfusions and epoetin alfa (Epogen), and you’ve gone through a lot. Not for me yet. So, I know we have a variable situation. Every once in a while, I’ve felt, gee, is the itching coming on? Or definitely feeling for my spleen. Is it enlarged, or getting larger, or smaller? Not that I’m trained in feeling for it.

So, I know we all worry about it. And so, you mentioned something, Dr. Scherber, about MPN specialists. So, if with ET, PV, MF, we notice some change, do we go to our MPN doctor first, or do we call our primary? How do we? Because we don’t know what’s connected, you know?

Dr. Scherber:   

Yeah, well, that’s a good question. Well, first off, I think always using common sense on the symptom. If you all of a sudden start having sudden chest pain that radiates down your arm and you feel kinda nauseous with it, I would recommend going straight to the emergency department.

Andrew Schorr:           

Call 9 – 1 – 1!

Dr. Scherber:

Yeah. But if it’s something, especially that you’ve talked about with your MPN physician, and you know that it’s been going on for a while but maybe it suddenly got worse, I do think it’s worth letting them know right away. If it’s something you’ve been dealing with for a long time, it might be worth talking to your primary care about and kind of doing a first pass to see if there’s kind of an obvious answer.

Some MPN physicians have been a while out of their general practice training. So, it always, I think, is worthwhile to really have a good collaboration between your MPN doc and your primary care doc. But overall, I think it is important to let your MPN physician know. And I think they can help you to kind of understand what might be due to the MPN or what might not.

Andrew Schorr:           

Well, let’s talk about what to do about it. So, Andi, you mentioned sweating. That’s been bugging you, right?

Andi Malitz:     

Bugging me, it’s taken over my life. And we have not been able to do anything about it. I don’t wanna say it was a constant battle, but it’s gotten worse over the years. And it’s very much different than, again, being – you know, women deal a lot differently with different things than men do at a certain age. We exhausted the menopausal situation. We did all those tests. I also had thyroid issues where four years ago, I had the left thyroid removed, and I’m on medication. There have been so many variables in my life.

And knock on wood too, like you said, I have been extremely fortunate. I am an incredibly healthy version of an ET patient. I’m DAC2 negative. I’ve been under the care of one of the leading clinicians in the country, Dr. Brady Stein at Northwestern. And we have gone through so many discussions such as sweating. The night sweats I can deal with. It’s the day sweats, as I call them, that interrupt probably more than any other symptom that I’ve had. Because my hair—you know, you’re at a social gathering. Everybody’s great. And all of a sudden, I’m having to excuse myself. So, still trying to figure out what to do about it, and not just the cancer.

Andrew Schorr:           

Dr. Scherber, I’m sure you don’t have answers for everything, and everybody’s different. But sweating, whether it is night sweats or during the day, are there any other solutions you think of?

Dr. Scherber:   

Yeah, that’s one of the harder symptoms. So, there are some symptoms that are a little bit easier to deal with, especially if we find a good, easy-to-treat cause. I mean, in this setting, I certainly would recommend checking—and it sounds like you already had this checked—but hormones levels. I’d check for thyroid function. If you’re on levothyroxine (Synthroid), it could be too high of a dose that can do that.

Sue Waite:       

Yeah, definitely.

Dr. Scherber:   

Sometimes, I know this is probably not a great scenario for you, but there’s some people that actually can even get rarely—I haven’t actually sent any MPN patients off for this, but sometimes, they can do injections, even Botox injections, to try help with sweating. It’s probably inflammatory mediated. But it doesn’t happen all the time. So, it might be worthwhile trying to be on a treatment that helps with inflammation. Not everyone has the ability to have that symptom go away with that, though. I’ve certainly heard of unremitting sweats, even just by the best anti-inflammatory treatments we have.

Andrew Schorr:           

And what about what we call the pruritus, I think is what you call it, but what Sue is talking about, this intolerable itching? A lot of people have that, whether they wanted to take a shower and they have itching, or it just happens at other times.

Dr. Scherber:   

Yeah, so, itching’s also kind of a complicated symptom. Sometimes, Benadryl, antihistamines, can help with itching. Also, there’s things like hydroxyzine that can sometimes help with itching. Even some topical medications can sometimes help. The other thing to think—about is how—especially if you have ET or PV and have itching—are how are the blood counts doing? Because often when the blood counts go too high, that can actually be a symptom of that.

And I have a fair amount of my PV patients that have horrible itching after showers. But once we get their blood counts under control—it’s usually when they first see me—they actually start to feel better. It gets more complicated in myelofibrosis. It seems to be that that itching doesn’t always respond as well and sometimes can be in the setting of low blood counts.

Andrew Schorr:           

Sue, how’s it worked out for you? So, are you still having that problem?

Sue Waite:       

Actually, in the last several years, it’s gotten better. And I don’t know if perhaps I started with PV and didn’t catch it before it turned into the myelofibrosis. And I take Claritin every day. That has helped some, the antihistamine.

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Page last updated on July 11, 2019