Discussing MPN Side Effects With the Care Team Aids in Personalized Care

Patients with myeloproliferative neoplasm (MPN) may experience several side effects related to treatment or the disease itself, but discussing these with their care team can help manage the symptoms, one expert said.

CURE® spoke with Tetyana Furmanets, an oncology nurse practitioner at Penn Medicine Abramson Cancer Center in Philadelphia, to learn more about the symptoms patients with MPN may face, why it is important for patients to discuss these with their care teams and how they can track these side effects so they can be mentioned at their next appointment.

What are some of the symptoms of MPN and are there ways to manage them?

A lot of patients with MPN report debilitating, generalized fatigue. That’s probably one of the hardest ones to manage, as well, because there’s no specific targeted agent for that.

If we’re talking generalized supportive measures, I would recommend our patients continue to exercise as much as possible while listening to their body, going on those daily walks while taking time to rest at home. Certain medications that patients are taking for MPN might help with the symptoms of fatigue. So that’s one of the factors that promote us to start taking those.

Some of the other symptoms that we see with MPN are itching. That’s one of the big ones. Specifically, patients report severe itching after they take a shower. Our recommendation is either lowering the temperature of the water before taking a shower or we also use topicals to help with that. There’s one lotion, which is over the counter, that we use a lot, Sarna cream, which is very helpful for our patients. So we recommend applying that after taking a shower while their skin is still wet, or taking medication 30 minutes or so prior to taking a shower might be helpful as well.

There are some side effects of MPN that are very tricky to deal with. Some of them may be fevers, which you can take Tylenol, but there comes a point of the disease process where Tylenol is not helping with it. So promote fluids, hydration. They can take Tylenol if needed. Sometimes that can be very helpful with symptoms of fevers as well as bone pain, which we see a lot with this patient population as well.

Some of the more vague symptoms that we see is difficulty with concentration, which is a little hard to get out of the patients to talk more about, but when you ask them about it, they’re definitely like, ‘Oh yeah, I definitely started noticing I’m having more issues with that.’ This one is a little harder to treat. But I feel like going for those walks and trying to like take breaks, take rest and listen to your body and don’t push it too hard, have been definitely helpful.

The other big one we see with MPN is getting full rather easily after a few bites of food. A lot of patients aren’t able to finish full meals because of their spleen size. They’re having some discomfort associated with their spleen. So that comes hand in hand along with fatigue and probably one of the biggest symptoms we see in this patient population. Some of the treatments help with reducing the spleen size. When patients do experience that, they’re so grateful and they feel amazing. They’re like, ‘I could finally finish a full plate and I’m able to sleep on that side.’ So that’s very encouraging.

Unfortunately, sometimes, patients don’t respond that well to treatment, so they’ll experience some of that left-sided abdominal pain. We work with nutritionists a lot for those patients because we encourage them to provide them with some small, frequent meals, which are high protein, high calorie content. So even though they’re not getting a lot of food in at one time, they’re still getting their adequate nutrition and their caloric amount during the day.

We work a lot with our palliative care team to help with the pain management aspects when we get to severe cases of myelofibrosis. Pain medication might help with that as well or just avoiding sleeping on that side, avoiding certain types of activity or exercise to avoid more trauma to the spleen. But I think just recommend small, frequent meals and trying to eat small portions have been beneficial for them as well.

Are there some symptoms related to MPN treatment?

As far as treatment for myelofibrosis goes, depending on the agent, they all come with their own side effects and adverse reactions. So some of them can cause similar side effects as the MPNs themselves. Therefore, it’s sometimes hard to distinguish what causes what.

But in general, I’ve noticed that in some of these patients, when the medication starts working, a lot of those symptoms go away and they feel much better, specifically if we’re utilizing Jakafi (ruxolitinib), which is a pretty common medication used for MPN. It’s, I would have to say overall, for the majority of our patients, pretty well tolerated. And we have noticed some benefits related to side effects. A lot of patients report shrinkage of their spleen, and it’s actually measurable during exams. The biggest one is, of course, itching. I had a patient who told me, ‘I was able to take a shower for the first time and not die itching to death.’ So that was very nice to hear, very encouraging.

And fatigue, a lot of patients experience more energy and they report that they didn’t realize how crappy they’re feeling before they started taking this medication, because this fatigue just becomes your new norm.

Some of the other medications — such as interferon that we sometimes utilize for MPN — come with slightly different side effects. There’s a lot of them, but I would say the most prominent one that patients experience is fevers and flu-like symptoms for about anywhere from one to three days after the injection. We do recommend for our patients to take Tylenol, Benadryl the night of the injection to sometimes help with the symptoms or do it over the weekend, which some patients told me that they would rather feel that way during the week and they have their weekends to themselves. And some patients prefer to do it on the weekends so they can just stay home and relax and rest.

So that’s some of them. But everybody’s different. Sometimes there are side effects that they never experienced before. But we do recommend for our patients to report those side effects early rather than later so we can catch them early, or change the dosages, change the frequency, because — it feels like with MPN, a lot of care is very individualized. So sometimes the dose that helps a lot of patients is entirely different for different patients. So we kind of have to play it by ear.

Is there any advice you would give patients regarding tracking their side effects?

Patients don’t realize how many of their symptoms are MPN related versus being tired from everyday life. So I think providing them with the set of those symptoms and maybe marking them off. A lot of patients keep diaries of how their symptoms are and how they’re feeling. And then when they come in, they can review it with us. And we could find where we can work better that might give them a little bit more perspective on how severe their disease is or how well they’re doing.

Why is it important for patients to discuss their MPN symptoms with the care team?

It’s important even reporting the little things that might feel truly off to them … such as fatigue, which can be caused by so many things. A lot of patients brush it off, and maybe don’t understand how much of it can be caused by the disease itself. So I think bringing up even little things that might seem unimportant to the nurses and discussing with the nurses like they’re losing weight and they don’t know why, even though they still have good appetite, stuff like that, monitoring those little things. For example, if someone comes in, and they lost like 10 to 15 pounds unintentionally, to figure out what else is going on. Why are they losing this weight? So picking up on those little things might be helpful and then relaying to the provider although they might seem very little and unimportant in the grand scheme of things given how vague this disease is, it might be very beneficial so if you need to adjust treatment or start something else if this treatment is not working.

Transcription has been edited for clarity and conciseness.

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