You are the key opinion leader of your disease — this was the sentiment shared by speakers in a panel about patient advocacy at the 2024 Pharma USA conference in Philadelphia. No one knows the ins and outs of your cancer experience more intimately than you do. There’ll be many points during your myeloproliferative neoplasms (MPN) treatment when you’ll need to provide your input, and you should always feel comfortable voicing any thoughts, opinions, or concerns you have to your doctor.

When it comes to your cancer care, there are no dumb questions. Doctors are sometimes pressed for time and may not explain every detail of your care if you don’t ask about it. Although your oncologist (cancer doctor) and other health care specialists will be the driver of your MPN treatment decisions, consider yourself an active passenger whose voice matters.

This article is informed by panel discussions at the 2024 Pharma USA conference and summarizes ways you can better advocate for your health care. Read on to learn about six actions your doctor wants you to take while living with MPN.

1. Prepare for Medical Appointments

One action to assist your MPN care involves preparing for your medical appointments. During these visits, you may receive a lot of information.

“When you get cancer, it’s like a bomb goes off. You can’t hear anything else,” said Dr. Monique Gary, an oncologist and Pharma USA panel speaker. It can be overwhelming and difficult to digest new information and news about your condition. That’s why preparing ahead of time is so important.

Before appointments, sit down and think about how you’ve been feeling. Note the questions you have regarding your medications, your diet, possible side effects you’re experiencing, and what you can and can’t do during treatment.

Better yet, keep a running list of questions on a piece of paper or an app on your phone. This way you’re less likely to forget questions as they cross your mind. Bring your list of questions with you to your next medical appointment, and discuss them with your doctor.

2. Bring Support to Your Medical Appointments

Dealing with MPN and undergoing treatment can affect your energy levels, concentration, and ability to think clearly. Thus, it can be helpful to bring a trusted friend or family member to support you during your appointments. This person can help advocate for you, make sure your questions are heard, and record important information from your doctor.

Asking a loved one for support with medical visits may be intimidating, but more often than not, people are happy to help and assist their friends in times of need. Just think, would you support a friend in this way if they asked you for the same type of support?

3. Be Honest With Your Oncologist

Be honest with yourself and your oncologist throughout your blood cancer treatment. The goals of MPN treatment will depend on the type of MPN you have but may include slowing the production of red blood cells, reducing the risk of blood clots, and treating your symptoms.

If you feel you have different goals or want a different outcome from your cancer treatment, tell your doctor. Terry Uhl, a colon cancer survivor who spoke at Pharma USA, encouraged people to be open with their doctors about their treatment goals, as that’s what helped him. Some treatments may have side effects that can interfere with your ability to do activities you enjoy or value, so make sure your doctor knows what’s important to you.

Help your doctor put your treatment goals into perspective, whether that’s improving your quality of life, decreasing fatigue, or reducing pain or other symptoms. Sometimes they can suggest additional or different treatments if your goals change or unbearable side effects crop up.

4. Ask About MPN Care Resources

Often, cancer centers have resources available for people going through treatment. Assistance may be financial or social and emotional. The MPN Research Foundation provides a list of resources, and nonprofits like CancerCare offer MPN support like counseling, financial assistance, and workshops.

The cancer center where you receive treatment may also have a variety of resources. Not all resources are publicized, and your doctor might not mention them unless you ask. Ask about different resources they offer for people with MPN so you can get connected with those that may benefit you.

5. Explain Your Barriers to Care

As discussed on different panels at the 2024 Pharma USA conference, health care providers often don’t have a sense of what you’re going through outside of a medical appointment. Do you have difficulty sticking with your prescribed treatment plan? If so, you may be nervous to share this information with your doctor. However, if you tell them why you’re having trouble following your treatment plan, there’s a chance that they can offer support and suggest ways to help overcome hurdles.

Barriers to care include:

• Being unable to afford medication or treatment
• Being unable to get transportation or drive to medical appointments
• Living far away from a pharmacy or cancer treatment center
• Not having health insurance
• Lacking social support (such as friends or family)
• Having a language barrier

If these or other obstacles keep you from following your MPN treatment plan, it’s important to tell your oncology provider. These factors can weigh into your treatment options and decisions. Knowing about them can help your doctor determine a treatment plan you can better stick with.

6. Find Out About Clinical Trials for MPN

Clinical trials are research studies that involve people and aim to develop new treatments and therapies. Sometimes, participating in clinical trials gives you access to treatment you wouldn’t have otherwise.

As discussed at the 2024 Pharma USA conference, doctors might be hesitant to tell people about clinical trials because it can affect their doctor-patient relationships. Doctors might not always tell you about current clinical trials you could be eligible for. If you’re interested in learning about clinical trials or participating in one for MPN, ask your provider. Add this topic to your list of questions to bring up at medical appointments.

Talk With Others Who Understand

On myMPNteam, the social network for people with myeloproliferative neoplasms and their loved ones, more than 4,000 members come together to ask questions, give advice, and share their stories with others who understand life with MPN.

Do you have MPN and want to communicate better with your health care providers? Do you have any tips about advocating for your care with MPN? Share your experience in the comments below, or start a conversation by posting on your Activities page.