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One Woman’s Journey to Help Control Her Polycythemia Vera

Provided by: Brandpoint - December 12, 2023

Susan and her family are an active group. Whether at home or traveling, she, her husband and her four children enjoy hiking outdoors, walking and biking. With her healthy lifestyle and few past medical concerns, Susan never could have imagined that she would be diagnosed with a serious condition.

In 2021, Susan was going about life as usual when she began to notice pressure in her left chest, swelling in her abdomen and hypertension, all of which were unusual for the normally healthy 61-year-old. Having been a nurse for nearly 40 years, Susan knew these weren't symptoms to ignore.

During her annual physical exam, her primary care physician found her spleen was enlarged and recommended she get a CT scan, a bone marrow aspiration and that she schedule an appointment with a hematologist-oncologist. To say Susan was shocked is an understatement.

"I actually started laughing because I never had to be under serious medical care like this," said Susan. "I kept telling him 'I felt fine,' and I didn't think all of this would be necessary, but my spleen was double the normal size and my doctor insisted."

The road to diagnosis

During her first appointment with her hematologist-oncologist, Susan learned her white blood cell count, hematocrit level and platelet counts were extremely high, which could have been signs of many other diseases. After six weeks, Susan was diagnosed with polycythemia vera (PV), a type of myeloproliferative neoplasm (MPN).

“This rare and chronic blood cancer causes the body to overproduce blood cells, thickening blood and increasing the risk of potentially life-threatening blood clots and cardiovascular complications,” said John Mascarenhas, M.D., Professor of Medicine, Hematology, and Medical Oncology at the Icahn School of Medicine at Mount Sinai in New York, who specializes in treating MPNs.

"The PV diagnosis stopped me in my tracks," Susan said. "Years ago, I remember caring for a patient in the ICU with PV, so I had a certain memory of how it was treated 40 years ago. It was very hard for me to wrap my brain around the diagnosis and think about my future."

Despite her fears, Susan dove headfirst into researching her condition using her medical knowledge and she wasn't alone. Her husband, who also works in the medical field, was with her every step of the way, helping her understand and interpret medical tests and jargon. The couple held off sharing Susan's diagnosis with their children until they had a treatment plan. As part of her care team, Susan’s children would accompany her to appointments, so it was important that they understood her diagnosis and how to best support their mother in her treatment journey.

Susan began phlebotomy, a procedure to remove excess blood cells, immediately after her PV diagnosis. Even though she worked in health care, Susan found using needles frightening.

"I had to report to the cancer center twice a week. My blood was thick, so it was difficult to withdraw 500 mL. The needle size was getting larger to pull out that 500 mL."

Advocating for the best treatment for her

Shortly after starting phlebotomy, Susan researched other PV treatment options and zeroed in on interferons, proteins that tell your immune system when cancer cells are present in the body and may trigger immune cells to fight them. She brought a stack of research articles on interferon treatment to her hematologist-oncologist. However, he advised against it and recommended she start treatment on a form of chemotherapy, which required multiple pills a day.

When Susan voiced her worries about chemotherapy, her doctor offered a referral for a second opinion with an MPN specialist, who became an invaluable part of Susan's care team. He was willing to explore all options, including interferons.

Susan and her husband felt like they had finally found an advocate for Susan. "He actually hugged us and reassured us that everything was going to be OK and that he was going to be our partner on this journey," said Susan.

In May 2021, Susan began interferon treatment, but it didn’t meet her treatment goals, and she had to continue phlebotomy treatments once a month to manage her condition. However, Susan had sought out peer support online, which clued her into another interferon treatment option, BESREMi® (ropeginterferon alfa-2b-njft), which she started in January 2022.

"I heard about BESREMi from the online support groups, and then at my next appointment, my MPN specialist brought it up, as I was about to bring it up myself," said Susan.

“BESREMi is an FDA-approved treatment option that is used to treat PV,” said Dr. Mascarenhas. “BESREMi targets the source of PV in the bone marrow and can help control excessive blood cell production.”

Before starting treatment, Susan spoke with her MPN specialist about possible side effects, including flu-like symptoms, itching and sore throat, and they agreed it was still the best option for her situation. Within a week, the medication arrived at Susan's doorstep.

"The way PharmaEssentia packages the medication that my specialty pharmacy provided to me made it easy for me to get what I needed. I also had support from the specialty pharmacy who works with PharmaEssentia SOURCE to help me access my prescribed therapy."

Within a few months, Susan's blood counts were near normal, and her MPN specialist was happy with her progress. While she still experiences anxiety about living with PV, she is starting to get more comfortable and filling her life with the activities she loves that help her mentally and emotionally, like hitting the gym, going on bike rides and lifting weights.

While on treatment with BESREMi, Susan experienced flu-like symptoms for a little more than a year, which she reported to her doctor and they worked together to address. Her side effects have since subsided and she’s feeling better. Looking back, Susan says she would still choose BESREMi despite the side effects because of the way it's helped her to manage her PV.

"I am confident that BESREMi is the right treatment option for me," she said. "My advice to patients diagnosed with PV is to seek peer-to-peer support, ask questions of your MPN specialist and be an advocate for your own health journey.”

If you're living with PV, it’s essential to be involved in your care decisions. Talk with your doctor to see if BESREMI is the right treatment option for you. To learn more, visit Besremi.com.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about BESREMi?

BESREMi can cause serious side effects that may cause death or may worsen certain serious diseases that you may already have. Tell your healthcare provider right away if you have any serious side effects during treatment with BESREMi. If symptoms get worse, or become severe and continue, your healthcare provider may tell you to stop taking BESREMi. These symptoms may go away in some people after they stop taking BESREMi.

  • Mental health problems, including suicide: BESREMi may cause you to develop mood or behavior problems that may get worse during treatment with BESREMi or after your last dose, including irritability (getting upset easily), restlessness and agitation, confusion, depression (feeling low, feeling bad about yourself or feeling hopeless), unusually grand ideas, acting aggressive, acting impulsively, or thoughts of hurting yourself or others, or thoughts of suicide. If you develop any of these symptoms, you, your caregiver, or family member should call your healthcare provider immediately. Your healthcare provider should carefully monitor you during treatment with BESREMi.
  • New or worsening autoimmune problems: BESREMi may cause autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body), including thyroid problems, increased blood sugar (hyperglycemia), and type I diabetes. In some people who already have an autoimmune problem, it may get worse during your treatment with BESREMi. Tell your healthcare provider if you have tiredness, are urinating often, or if you are very thirsty.
  • Heart problems: BESREMi may cause heart problems, including problems with your heart muscle (cardiomyopathy), heart attack, abnormal heart rhythm (atrial fibrillation), and decreased blood flow to your heart. You should not use BESREMi if you have high blood pressure that is not controlled, congestive heart failure, a serious abnormal heart rhythm, narrowing of the arteries to your heart, certain types of chest pain (angina), or a recent stroke or heart attack. If you have a heart problem before you start using BESREMi, your healthcare provider should monitor you closely during treatment with BESREMi.

Who should not use BESREMi?

Do not use BESREMi if you:

  • have or had severe mental health problems, especially severe depression, thoughts of suicide, or attempted suicide
  • have or had a serious or untreated autoimmune disease
  • have had a serious allergic reaction to another interferon product or to any of the ingredients in BESREMi. Symptoms of a serious allergic reaction may include itching, swelling of your face, tongue, throat, trouble breathing, feeling dizzy or faint, and chest pain
  • have certain types of liver problems
  • have received a transplant and take immunosuppressive medicines

Before using BESREMi, tell your healthcare provider about all of your medical conditions, including if you:

  • are being treated for a mental illness or had treatment in the past for any mental illness, including depression and have had thoughts of hurting yourself or others
  • have type 1 diabetes
  • have or ever had any problems with your heart, including heart attack or high blood pressure
  • have or ever had bleeding problems, a blood clot, or low blood cell counts
  • have a condition that suppresses your immune system, such as certain cancers
  • have hepatitis B or HIV infection
  • have kidney or liver problems
  • are pregnant or plan to become pregnant. BESREMi may harm your unborn baby and may cause loss of your pregnancy (miscarriage).
    • Before you start using BESREMi your healthcare provider should do a pregnancy test.
    • You should use effective birth control during treatment and for at least 8 weeks after your final dose of BESREMi. Talk to your healthcare provider about birth control choices for you during treatment with BESREMi.
    • BESREMi can affect your menstrual cycles and may cause your menstrual periods to stop.
    • Tell your healthcare provider if you become pregnant during treatment with BESREMi.
  • are breastfeeding or plan to breastfeed. It is not known if BESREMi passes into your breast milk. You should not breastfeed during treatment and for 8 weeks after your final dose of BESREMi.

What are the possible side effects of BESREMi?

BESREMi can cause serious side effects including:

  • Decreased blood cell counts: Your healthcare provider should check your blood cell counts before you start and during treatment with BESREMi. If your blood cell counts are too low you can develop anemia, infections or have problems with bleeding or bruising.

    Call your healthcare provider right away if you develop weakness and tiredness, bruising easily, nose bleeds often, fever, chills, burning and painful urination, urinating often, or coughing up yellow or pink mucus (phlegm)
  • Serious allergic reactions and skin reactions: Get medical help right away if you get any of the following symptoms: skin rash or hives; itching; swelling of the face, eyes, lips, tongue or throat; trouble breathing; chest pain; or feeling faint
  • Eye problems: BESREMi can cause severe eye problems with your retinas that can lead to vision loss or blindness. You should have an eye exam before and during treatment with BESREMi if you have diabetes or high blood pressure and also have retinal problems. Your healthcare provider may stop BESREMi if you develop new or worse eye problems during treatment with BESREMi.
  • Liver problems: BESREMi can cause increases in liver enzymes and liver damage. Your healthcare provider should do blood tests to monitor your liver enzymes and liver function before you start and during treatment with BESREMi.
  • Kidney problems: Your healthcare provider will do blood tests to check your kidney function before starting and during treatment with BESREMi. Tell your healthcare provider right away if you develop any symptoms of a kidney problem, including changes in the amount or color of your urine, blood in your urine, swelling in your ankles, or loss of appetite. Your healthcare provider may stop BESREMi if you develop severe kidney problems.
  • Tooth and gum (periodontal) problems: BESREMi can cause tooth and gum problems which can lead to tooth loss. BESREMi can also cause problems with dry mouth that can damage your teeth and the lining of the mouth during long-term treatment with BESREMi. It is important for you to brush your teeth well, two times each day and have regular dental examinations during treatment with BESREMi.
  • Skin problems: BESREMi can cause skin problems. Signs and symptoms of a skin problem with BESREMi include itching, hair loss, rash, redness, psoriasis, acne, thickening of the skin, or excessive sweating. Call your healthcare provider if you develop a rash that is bothersome or covers a large skin area.

The most common side effects of BESREMi include:

  • flu like symptoms including tiredness, weakness, fever, chills, muscle aches, and joint pain
  • itching
  • sore throat

Please see full Prescribing Information, including Boxed Warning, and Medication Guide for BESREMi.

What is BESREMi?

BESREMi is a prescription medicine that is used to treat adults with polycythemia vera

For more information, visit: https://us.pharmaessentia.com.

© 2023 PharmaEssentia Corporation. All rights reserved. US-BSRM-2300215 (v1.0) 11/2023

BESREMi and PharmaEssentia are registered trademarks of PharmaEssentia Corporation, and the PharmaEssentia logo is a trademark of PharmaEssentia Corporation.

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