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Why It’s Worth Seeing an MPN Specialist — Even Once

Posted on January 03, 2022
Medically reviewed by
Todd Gersten, M.D.
Article written by
Imee Williams

There are about 295,000 people in the United States with myeloproliferative neoplasms (MPNs), rare blood cancer diseases. Because MPNs are rare, seeking care from a physician who specializes in treatment for this specific type of blood cancer can be a good idea, especially during the earliest stage of your diagnosis. However, finding an MPN specialist can be a challenge, as there are a limited number of them in the United States, and even fewer worldwide.

Dr. Andrew Kuykendall is a hematologist-oncologist (a blood disease and cancer specialist) and clinical researcher at the Moffitt Cancer Center in Tampa, Florida. Dr. Kuykendall, who specializes in MPNs, spoke with myMPNteam to discuss the benefits — and importance — of seeing an MPN specialist. He also suggested resources to help locate one near you.

Symptom Management

There are several types of MPNs — polycythemia vera (PV), primary myelofibrosis (MF), and essential thrombocythemia (ET), for example. And although MPNs are not curable, there are many types of treatments available that can help manage your particular symptoms. An MPN specialist can confirm your MPN diagnosis, assess your potential risk factors, offer advice or recommendations, and help you make informed decisions to improve your quality of life.

“I’m dedicated to spending my day with my patients, talking to them, getting things organized, understanding where they’re coming from, and coming up with a plan that makes sense, both to me and to them, so that we can kind of work on managing this disease together,” Dr. Kuykendall said.

Dr. Kuykendall also coordinates with a person’s local hematologist-oncologist about their treatment plan, communicates with pathologists about their lab results, and makes sure their medications are prescribed in a timely manner.

Members of myMPNteam have shared the benefits of seeing a specialist. “My MPN specialist has treated me somewhat more aggressively than my hematologist-oncologist. They have kept a closer eye on my diagnosis and lab results. I also am able to have a thorough conversation with them about all my treatment options,” shared one myMPNteam member.

Learn About Your Condition

Dealing with a new MPN diagnosis can be frightening and difficult to understand. It is important that you gather what information you can and that you are confident about the information you are given. One thing that helps is to look for a physician who is familiar with and actively treats MPNs. Seeking guidance from such a specialist is especially beneficial because that doctor is likely to be more up-to-date with MPN research and ongoing clinical trials than nonspecialists. Further, MPN specialists are highly educated about the specific types of MPNs and well-informed about therapies and treatments approved by the U.S. Food and Drug Administration (FDA).

“It’s important to see an MPN specialist at least one time, but it would be great to see them more regularly,” said Dr. Kuykendall. He added that the prescribed care can be done locally by an oncologist in your community. “Just call us if you need us, or come back once a year to check in,” he advises the people with MPNs who come to him for a consultation.

The MPN Research Foundation is a national organization dedicated to MPNs. They have recently issued a Bill of Rights that may help guide you in assessing aspects of your care.

Find an MPN Specialist

“The community of doctors that focus on MPNs is very small,” Dr. Kuykendall commented. “Typically you’ll find [MPN specialists] at major cancer institutions in the U.S. and the world.” At many cancer centers and medical institutions, when you are introduced to your MPN specialist, you are welcomed into a tight-knit, supportive community. “We know everyone. We interact with everyone [who] we collaborate with, and we all have the same common goal,” said Dr. Kuykendall.

If you are being cared for by an oncologist in your community who does not specialize in MPNs, they likely can connect you with an MPN specialist, so you get the benefits of working with both health care teams.

To find a MPN specialist on your own, here are two helpful online resources:

  • The American Society of Hematology — This group’s online database locates treatment facilities and hematologists who have a clinical interest in myeloproliferative disorders, including MPNs.
  • MPNforum — This group of people with MSNs, specialists, and scientists publishes a running list of MPN professionals in the U.S. and elsewhere in the world. The chart is organized by location and was last updated in 2020.

Telehealth as an Option

Telehealth doctor’s appointments (those conducted over mobile devices and computers) can be valuable, said Dr. Kuykendall — especially for people who live far from their MPN specialist and need frequent follow-up visits. “It is not realistic to have someone drive five hours to see me every three months just to look over labs,” he said.

If you would have to travel far from where you live to see a particular MPN specialist, before you make your initial appointment with them, ask if telehealth visits are an option for your follow-ups. The answer might influence the specialist you decide to choose. You can also ask your local oncology team about consulting with an MPN specialist virtually.

Clinical Trials

The goal of cancer research is to identify new and safer treatments that will offer the best chances of survival and quality of life for people diagnosed with cancer. Consulting with an MPN specialist can help people with MPNs stay well-informed about current relevant clinical trials.

You can also find out about current clinical trials related to MPN on your own online. The MPN Research Foundation and the MPN Cancer Connection both provide lists of ongoing clinical trials within the United States and 196 countries worldwide.

“If you do have the ability to get close to a specialty center, try to get involved in clinical trials,” Dr. Kuykendall advised. Participating in trials can help advance the field of MPN treatment. He explained that clinical trials run the gamut. Some are final-stage trials that are comparing an investigational therapy against the best currently approved therapy. Others may be testing therapies in earlier stages. Dr. Kuykendall also noted that not all clinical research involves taking a treatment. “Some can just be providing some blood samples or a bone marrow sample just to allow us to learn more about the disease,” he said.

It is important to note that the long-term side effects of a new treatment or whether the treatment will benefit an individual are not certain. Speak to your cancer care team if you are a good fit for a clinical trial study.

Talk With Others Who Understand

On myMPNteam, nearly 2,000 people come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

Are you considering seeing or have you been seen by an MPN specialist? Share your experiences in the comments below, or start a conversation by posting on your myMPNteam Activities page.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Imee Williams is a freelance writer and Fulbright scholar, with a B.S. in neuroscience from Washington State University. Learn more about her here.

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