How Can You Thrive With an MPN? Advice for Navigating Care.
How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.
How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.
Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.
Meet, Dr. Liu – my doctor.
Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care of people with myeloproliferative neoplasms or MPNs.
MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. The three types of MPNs are essential thrombocythemia, or ET, polycythemia vera or PV, and myelofibrosis, or MF.
As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN.
It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team.
That’s right, Brian. When considering treatment, it’s important to weigh all of your options.
While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.
And as someone who knows my needs well, my wife is another key member of my team. She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options.
So, Dr. Liu – what factors should be considered when choosing an MPN treatment?
Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as:
- The type of MPN, whether it is ET, PV, or MF.
- The patient’s age and overall health.
- Test results, including blood work or any genetic testing that has taken place.
- The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life.
- Any pre-existing health issues.
- Finally, and most importantly, the patient’s preference.
And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision.
Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan?
Great question. When choosing therapy, patients should ask:
- How is the treatment administered, and how often will I need treatment?
- What are the potential side effects of the treatment?
- How will the effectiveness of the treatment be monitored?
- And, what are options if this treatment doesn’t work for me?
That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team.
That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue.
It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary.
So, what steps should you take to thrive in your life with an MPN?
- First, understand and participate in treatment decisions. Be sure to share your personal preferences.
- Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.
- And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you.
- Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team.
- Bring a friend or loved one to appointments and always write down any questions or concerns in advance.
And, most importantly, remember you are at the center of your care. Advocate for yourself!
To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us!