Conversations With Clinicians Make Way for MPN Symptom Control


Some symptoms of myeloproliferative neoplasms are “pretty broad,” highlighting the importance of open communication with cancer teams to manage the symptoms and improve quality of life.

Patients with myeloproliferative neoplasms (MPNs) may experience a broad range of symptoms — fatigue, aches and pains, and insomnia, among others — emphasizing the importance of open communication with care teams to address them accordingly, an expert said.

Lindsey Lyle, a physician’s assistant who previously worked at Rocky Mountain Cancer Center, a U.S. Oncology Community Practice Group, spoke with CURE® about the symptoms of MPNs, how they can be challenging to assess and how patients can aid in the management of these symptoms.

What are some of the symptoms of MPN?

Pull quote saying: "Unfortunately, these symptoms are not very specific for one thing in particular..."  -Lyndsey Lyle  in an orange circle

Since MPN symptoms can mimic other health conditions, it is sometimes difficult to determine what is causing the issue, an expert said.

The symptom burden in patients with a myeloproliferative neoplasm can be pretty broad. And unfortunately, these symptoms are not very specific for one thing in particular, and this is what makes the assessment of these symptoms in patients fairly challenging.

There are a number of symptoms that are fairly commonly recognized to be associated with MPNs. And these consist of fatigue, bone aches and pains, night sweats, unintentional weight loss, itching — especially after a hot shower or being out in warm weather — and then pain under the left ribs, early satiety (the feeling of being full very easily), and sometimes concentration problems even, insomnia, difficulty sleeping.

Can treatment alleviate the symptoms for the disease?

Current treatments for myelofibrosis were approved based on improvement in symptoms. And so, we do know that a number of these treatments — JAK inhibitors specifically, which are the FDA-approved therapies for myelofibrosis — really can help with improving symptom burden. This was one of the main endpoints for the study that led to the approval of all of these JAK inhibitors, as well as spleen volume reduction. So we would expect that symptoms would improve, to some degree, on therapy.

Similarly, with polycythemia vera, we do hope that as we gain better control of the disease, that we are not only improving symptoms by lowering the counts to help improve symptoms by that way, but also really slowing down overactive cytokine production. And by doing that, help alleviate some symptoms.

Now, there are some potential side effects with whatever treatment the patient is on. And so then, certainly, the patient may experience some symptom that is possibly related to the treatment. But this is really where teasing out symptoms prior to and then after starting therapy can be really helpful.

And are symptoms easily managed?

The symptoms that that occur as a result of the disease, sometimes these can be really challenging to treat, honestly. Even if the patient is on appropriate therapy, they may still have symptoms of the disease. And then we have to get creative and utilize our resources, utilize what's reported in the literature about how best to manage these symptoms that are not necessarily being controlled perhaps by the primary therapy.

Side effects from the therapies that are used to treat polycythemia vera and myelofibrosis are generally really well managed. And most of the patients, even on any of these trials, had a very low discontinuation rate due to the symptoms that were thought to be related to the therapy that was being studied.

What advice would you give patients about their symptoms?

The first thing that is important for patients to understand is what symptoms could possibly be related to their MPN. I generally ask my patients to just keep track, not to become obsessed with these things and write them down on a daily basis, but if they notice that there's some symptoms, that is impairing their quality of life, preventing them from doing something, I do ask them to write it down.

Oftentimes, when patients come to their visit, they forget different things that have happened throughout the time since they last saw you, maybe they are just a little overwhelmed by the visit itself. And so they just unintentionally forget to bring these things up. So, writing them down and having a way for patients to track their symptoms is really important.

And some of the best conversations I have with patients come from those patients who do write these things down. They say, ‘Gosh, on this day, I really realized this was happening. And how can we improve this?’

I think that from a patient's perspective, No. 1, having the knowledge about what symptoms may be associated with their MPN is critically important, making sure that they're jotting down symptoms that they are experiencing. And then also just jotting down any other things that happen in their medical history. So we may be seeing these patients monthly, we may be seeing them every three months, depending on their stability. But most of these patients are in their 60s or 70s. And so they may have other things going on as well. So just keeping a good track of anything else that has popped up will be really helpful in the assessment.

How can patients with MPNs work with their care team to address any symptoms they may be experiencing?

Don't be afraid to talk to your nurse (or) your health care provider about anything that's going on, because that is our job to figure out if this is related to the MPN or if we should maybe pursue other investigation for these symptoms.

You don't have to do it alone. That's why we're here for you. So don't be afraid to bring anything up, and then we can go from there and hopefully find ways to improve whatever you're experiencing.

This transcription has been edited for clarity and conciseness.

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