A Rare Condition: A Conversation With MPN-Specialty Nurse Erin Blackwell

Erin Blackwell, RN, BSN, OCN

Erin Blackwell, RN, BSN, OCN

For patients diagnosed with myeloproliferative neoplasms (MPNs), just the diagnosis can leave them spinning with confusion. It’s not a common disorder, and there isn’t much known about it. Sometimes people aren’t even aware that it’s classified as a blood cancer. The job of the oncology nurse starts there—with education and being an essential source of information.

Recently, Oncology Nursing News sat down with Erin Blackwell, RN, BSN, OCN, and one of the 2016 MPN Heroes. Blackwell, a nurse at the Levine Cancer Institute in Charlotte, North Carolina, was honored for her personalized care when treating patients with MPNs. In this interview, Blackwell discusses the lack of knowledge about this condition, how nurses can personalize care for their patients, and how the MPN population is growing.

Oncology Nursing News: What attracted you to practice in this specialty?

Blackwell: I knew that I wanted to work with oncology patients since I became a nurse. I started out on an inpatient oncology unit where we had a mix of everything: medical/surgical, hematology, solid tumors. I quickly found that my favorite population to take care of was liquid tumors, particularly leukemia patients and patients with myeloid syndromes. That's what brought me to Levine Cancer Institute, where I worked with 2 providers, 1 of whom subspecialized in MPNs, and through this work, I developed an understanding of myeloproliferative neoplasms.

Generally speaking, we're able to avoid inpatient admissions for MPNs. We see them much more often on the outpatient side. I started working with them about 18 months ago and really got to understand what MPNs are and how we treat them and got to work with that patient population. And I thoroughly enjoy it.

What are some of the most important considerations when someone is newly diagnosed with an MPN?

Quality of life, the symptoms they're managing, their social situation, and how we're going to devise a plan of care that's going to best suit and be personalized to this particular patient. MPNs are special, in that we don't know as much about them as we do some of the other blood cancers. A lot of patients don't know very much about them when they come into the office and they hear those words. Many people don't even know that MPNs are classified as blood cancers. There's usually a huge educational deficit, and that's where my role is. I get to fill that deficit and help these patients understand what their condition is, how to treat it and how they can be their own advocates in their care.

For this complicated condition, what resources do you recommend or suggest?

The online support groups for MPNs are a very large player in the support that we're able to offer to these patients today. There are a lot of great programs out there, for example, the Leukemia and Lymphoma Society. Insight also provides help for patients with medication and other assistance. There are great patient advocacy groups out there for MPNs and research foundations that we can help refer these patients to for more information about their condition.

With all of the recent research, how has practice and treatment changed?

We're definitely seeing MPNs more often. Although I haven't worked with them the duration of my career, it seems like we do have a lot more resources, even since 2005, the research that's been done, the medication options that we have for patients. We now have an FDA-approved therapy for it. And we have, even now, the option for transplant for patients with myelofibrosis, the only curative treatment option, which we didn't necessarily have or know very much about a decade ago.

Could you discuss that drug, ruxolitinib (Jakafi), and what patients might expect while they’re taking it?

Ruxolitinib is a drug that we prescribe very commonly for our patients both with polycythemia vera (PV) and myelofibrosis. It is approved for PV, if they fail hydroxyurea, and for myelofibrosis, it's the only FDA-approved therapy. There are a lot of different side effects that we can see with ruxolitinib. All of that is covered at the initial time that they're prescribed the medication.

We also usually have the ability to taper ruxolitinib, based on the symptoms that patients experience. Every time that we see a patient, we give them an MPN symptom assessment form; it's essentially 10 symptoms to rate them from 0 to 10 ranging from I'm not experiencing this at all to I'm experiencing very much. It's really interesting for me to get to look back and see, once we've started them on treatment, what their score comes down to. The maximum score, if they have every symptom and it was the worse it could possibly be, would be 100. Alternatively, if they were asymptomatic entirely, it would be 0. To see how their symptoms are managed on ruxolitinib has been really interesting.

You were honored for the personalized care that you give to patients. What does that personal care look like, and what do you try to focus in on?

It's really important to understand patients. Every patient experiences things differently because they have a different view of what their condition is and how it affects their life. Everybody has a different social situation. No 2 patients are the same. And we should make sure that we're providing care to these patients; we recognize that. We meet them where they are, and we're able to provide for them in their needs in that moment.

My favorite part about my job and what I strive to do is build relationships with my patients. It's really hard to balance. It's not a personal relationship, it's a working relationship. But sometimes it's hard to find the balance, because you get to know these patients very well and it's important to know them well so you can make sure you're providing care to them that's personalized and individualized for them, and makes sense for their life.