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Although it isn’t always an easy thing to do, staying engaged with their cancer care can help patients feel more empowered after receiving a diagnosis that can make life feel out of their control. That was the case for Cherie, a stage III ovarian cancer survivor.
Years before her ovarian cancer diagnosis, Cherie faced breast cancer and later tested positive for the BRCA-1 gene mutation. She knew that this gene mutation makes women more susceptible to developing ovarian cancer, but believed that regular check-ups with her doctor were enough to detect an early diagnosis. At the same time, she was mustering up the courage to have a preventative surgery, which is another option for BRCA-1 positive women. When she received her ovarian cancer diagnosis, she was shocked that it was late-stage (stage IIIB). “I thought I was doing everything I could,” she says. Now, she wants more women to be aware of the signs and symptoms of ovarian cancer, like belly pain and a feeling of heaviness in the pelvic area, which for her went misdiagnosed as gastrointestinal issues, as there is no early detection test for ovarian cancer.
After each recurrence of ovarian cancer, the time spent in remission or in response to chemotherapy may get shorter. Maintenance therapy may help extend the time before a recurrence, or between recurrences. By being proactive and working with their gynecologic oncologists, both Leanne and Cherie were able to take a maintenance treatment option called ZEJULA (niraparib, 100 mg capsules). ZEJULA is an oral drug known as a PARP-inhibitor, which works by preventing cancer cells from repairing their damaged DNA in people with certain kinds of cancer. ZEJULA can also affect other cells and tissues in the body.
Though they’ve never met, Leanne C., a 62-year-old financial advisor, and Cherie T., a 49-year-old hotel operations manager, share a connection. They’re both women living with advanced ovarian cancer who took an active role in their care and worked with their doctors on a treatment plan. Now, they’re sharing their experiences in the hopes of reaching women like themselves. These are Leanne and Cherie’s experiences, and others may be different.
Leanne C. and Cherie T. played an active role in deciding how their “second act” would look while living with ovarian cancer
Two ovarian cancer survivors share their stories
ZEJULA is a prescription medicine used for the maintenance treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy.
It is not known if ZEJULA is safe and effective in children.
ZEJULA may cause serious side effects such as bone marrow problems called myelodysplastic syndrome (MDS) or a type of blood cancer called acute myeloid leukemia (AML), which may lead to death. Symptoms of low blood cell counts may include weakness and can be a sign of serious bone marrow problems. Contact your doctor for new onset of bleeding, fever, or infection. High blood pressure is common and can become serious. Posterior Reversible Encephalopathy Syndrome (PRES) is a condition that affects the brain and may happen during treatment with ZEJULA. Tell your doctor if you have headache, vision changes, confusion, or seizure. Tell your doctor about all your medical conditions and medications, and if you are pregnant or breastfeeding or plan to be. Some common side effects include nausea, low blood cell counts, tiredness, constipation, muscle and back pain, headache, and trouble sleeping.
Please see additional Important Safety
Information below.
ZEJULA (niraparib) Indication and Select Safety Information
ZEJULA is a prescription medicine used for the maintenance treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy.
It is not known if ZEJULA is safe and effective in children.
• Heart not beating regularly
• Nausea
• Constipation
• Vomiting
• Pain in the stomach area
• Mouth sores
• Diarrhea
• Indigestion or heartburn
• Dry mouth
• Tiredness
• Loss of appetite
• Urinary tract infection
• Changes in liver function or other blood tests
• Pain in your muscles and back
• Headache
• Dizziness
• Change in the way food tastes
• Trouble sleeping
• Anxiety
• Sore throat
• Shortness of breath
• Cough
• Rash
• Changes in the amount or color of your urine
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By Alice Lesch Kelly
When Leanne received a diagnosis of stage III ovarian cancer, she felt isolated and alone. Leanne had no family members living near her home in White Plains, New York. And she admits she hadn’t done a great job of staying connected with her friends over the years. “My heart just sank,” she says. She realized she had a choice: to tackle one of the most significant challenges of her life by herself or to ask for help.
But reaching out to others would be challenging. “I was used to being the one who gave help, not the one who asked for help,” she says. Still, she didn’t want to face cancer alone, so she summoned her courage and let herself lean on those around her.
“I opened up and asked people to be there for me,” Leanne recalls. The response couldn’t have been more positive. One of Leanne’s coworkers even offered to come with Leanne to some of her first few doctor’s appointments. “I was like a deer in the headlights,” says Leanne, but having someone at her side helped her navigate those early visits.
For Leanne, opening up was the first step
Her coworker also suggested Leanne start a cancer notebook to write down everything related to her treatment, including appointments, medications, questions, and symptoms. “That was a pretty critical thing for me — you really have to have some kind of a system,” she says. “Even now, I refer back to that notebook.”
Reaching out also helped her grow closer with friends. “Because I was feeling isolated, I asked people to call me,” Leanne says. Her former college roommate began calling every Saturday night — and continues to do so to this day. “I was completely overwhelmed,” she says. “Even though my friends were across the country, they rallied to be there for me.”
“Because I was feeling isolated, I asked people to call me... Even though my friends were across the country, they rallied to be there for me.”
Leanne’s decision to ask for help was the first of many times she took an active role in her ovarian cancer management. Since then, she has advocated for herself frequently, working collaboratively with her medical team, participating in support groups, and asking for help with everything from food preparation to rides to the hospital for chemotherapy.
But, while Leanne felt good about the support network she’d built, the possibility of experiencing a recurrence was in the back of her mind. Approximately 85% of women with advanced ovarian cancer will experience recurrence after initial chemotherapy treatment.¹ After carefully considering her options with her oncologist, Leanne made another choice to actively manage her care: She went on maintenance therapy, a type of treatment given after a patient has responded to chemotherapy, possibly extending the time before a patient’s cancer returns.
Cherie became an advocate for herself — and others
In addition to leaning on her family, Cherie took charge of her emotional health. “You want to take care of yourself — not just physically, but also mentally,” she says. She joined support groups, connecting with other cancer survivors and meeting women who soon became close-knit friends. “They are such a positive group of women to be surrounded by,” Cherie says. “They get what I’m going through. And they’re a great resource for information.”
Like Leanne, being involved with a community of cancer survivors inspired Cherie to become more active. “My interest, involvement, and passion for spreading awareness about ovarian cancer has grown throughout my journey,” she says.
Cherie knew that even with surgery and a positive response to chemotherapy, her cancer was likely to recur. She wanted to be as proactive as possible in her treatment. In the past, after testing positive for BRCA-1, Cherie had opted not to have surgery. Now, she says, she wants to explore every option so she knows she’s being proactive with her care. She and her doctor had discussed advancements in ovarian cancer treatments, including maintenance therapy, so she knew she had choices when it came to potentially prolonging the time before a possible recurrence.
“I thought I was doing everything I could.”
On the morning she received her diagnosis, Cherie’s husband had just accepted a new job that would require him to spend 75% of his time traveling. It was, Cherie says, an “emotional rollercoaster” — to have gone from celebrating a career move to the difficult news of her diagnosis. They both knew Cherie would need support in her cancer fight. So, to make sure she had someone to take her to medical appointments and chemo sessions, Cherie and her husband asked her mother to move from Florida to Illinois to live with them.
“My mother did all the cooking, and she would go to all the appointments with me to be that second set of eyes and ears,” Cherie says. Being close with her extended family also helped Cherie stay positive. “Every weekend, my brother and sister, and my nieces and nephews would come down,” she says, and she would attend her nieces’ and nephews’ sporting events. “I’ve been really fortunate to have really good, close-knit family and friends.”
01:
Cherie at hospital recovering from debulking surgery
02:
Cherie during course of chemotherapy treatment
03:
Cherie and her mother on the day she shaved her head
Taking an active role with maintenance therapy
After starting maintenance therapy, both women stayed in close contact with their doctors to schedule blood work and have their blood pressure and heart rate monitored, which is required when taking ZEJULA. Their doctors also discussed and helped manage some common side effects, such as loss of appetite, fatigue, and headaches. “I was just really tired and worn down, just no energy,” says Cherie. But working closely with their doctors to adjust their dosage helped manage the symptoms. These are not all the side effects associated with ZEJULA, and patients should always talk to their doctor to understand the benefits and risks. Women may have different experiences taking ZEJULA, which is why it’s important they communicate with their doctors about side effects and how they're feeling while undergoing treatment with maintenance therapy.
Patients like Leanne and Cherie require visits to doctors and hospitals after their diagnosis and for monitoring while taking ZEJULA. However, ZEJULA is an oral medication taken at home, so hospital or clinic administration is not required for this treatment. Both women were able to find a routine that worked for them. While an advanced ovarian cancer diagnosis requires ongoing and frequent monitoring with healthcare teams, she tries to embrace each phase of her journey with a proactive and positive outlook. “I’m trying to figure out, you know, what I want to do with the second act of my life now,” says Cherie.
Taking an active role in their treatment gave Leanne and Cherie a sense of control that can easily be lost during cancer, and they hope their stories inspire other women to do the same. “One of the things I’ve learned is that the patient has a choice,” Cherie says. “You can participate in making decisions about your treatment. You are in charge of your healthcare journey and how you’re treated.”
As for Leanne, she speaks with a lot of women who are considering maintenance therapy and offers this advice: work closely with doctors, and think of them as a partner in your care. “If something doesn’t feel right, tell them,” she says. She’s also grateful to have her network of friends and doctors and continues to look to them for support. “I’m trying to make sure that I’m maintaining connections and making sure that I’m having effective communications and meaningful conversations,” she says.
Looking ahead
References
¹ Lorusso D, Mancini M, Di Rocco R, Fontanelli R, Raspagliesi F. The role of secondary surgery in recurrent ovarian cancer [published online August 5, 2012]. Int J Surg Oncol. 2012;2012:613980. doi:10.1155/2012/613980.
² Luvero D, Milani A, Ledermann JA. Treatment options in recurrent ovarian cancer: latest evidence and clinical potential. Ther Adv Med Oncol. 2014;6(5):229-239
³ Hanker, L., Loibl, S., Burchardi, N., Pfisterer, J., Meier, W., Pujade-Lauraine, Harter, P. Impact of second to sixth line therapy on survival of relapsed ovarian cancer after primary taxane/platinum-based therapy [published online August 21, 2012]. Annals of Oncology, Volume 23, Issue 10, 1 October 2012, Pages 2605–2612
⁴ SEER Cancer Stat Facts: Ovarian Cancer. National Cancer Institute. Bethesda, MD. http://seer.cancer.gov/statfacts/html/ovary.html. Accessed May 2021.
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04:
Cherie's family and support system
05:
Cherie and her college friends at Ohana outdoor music festival
06:
Cherie and her siblings at the NOCC walk
A unique connection:
05:
Leanne reached out to friends for support
03:
Gilda's Club for cancer patients and families, where Leanne found support after her diagnosis
02:
Leanne and her former college roommate, who began calling her every Saturday night
01:
Leanne with her coworker, Anna Marie
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There are approximately 222,000 women in the US living with ovarian cancer.⁴
Approximately 85% of women with ovarian cancer will see the cancer return in their lifetime¹
222,000
04:
Leanne working on her vision board
85% recurrence
85%
222,000
222,000 women
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Indication and Important Safety Information
Indication
Important Safety Information
ZEJULA may cause serious side effects, including:
Bone marrow problems called Myelodysplastic Syndrome (MDS) or a type of blood cancer called Acute Myeloid Leukemia (AML). Some people who have ovarian cancer and who have received previous treatment with chemotherapy or certain other medicines for their cancer have developed MDS or AML during treatment with ZEJULA. MDS or AML may lead to death.
Symptoms of low blood cell counts (low red blood cells, low white blood cells, and low platelets) are common during treatment with ZEJULA. They can be a sign of serious bone marrow problems, including MDS or AML. These symptoms may include the following:
• Weakness
• Feeling tired
• Weight loss
• Frequent infections
• Fever
• Shortness of breath
• Blood in urine or stool
• Bruising or bleeding more easily
Your doctor will do blood tests to check your blood cell counts before treatment with ZEJULA. You will be tested weekly for the first month of treatment with ZEJULA, monthly for the next 11 months of treatment, and from time to time afterward.
High blood pressure is common during treatment with ZEJULA, and it can become serious. Your doctor will check your blood pressure and heart rate at least weekly for the first two months, then monthly for the first year, and as needed thereafter during your treatment with ZEJULA.
Posterior reversible encephalopathy syndrome (PRES) is a condition that affects the brain and may happen during treatment with ZEJULA. If you have headache, vision changes, confusion, or seizure, with or without high blood pressure, please contact your doctor.
Before starting to take ZEJULA, tell your doctor about all of your medical conditions, including if you:
• Have heart problems
• Have liver problems
• Have high blood pressure
• Are allergic to FD&C Yellow No. 5 (tartrazine) or aspirin. ZEJULA capsules contain tartrazine, which may cause allergic-type reactions (including bronchial asthma) in certain people, especially people who also have an allergy to aspirin
• Are pregnant or plan to become pregnant. ZEJULA may harm an unborn baby and may cause loss of pregnancy (miscarriage)
– If you are able to become pregnant, you should use effective birth control (contraception) during treatment with ZEJULA and for 6 months after taking the last dose of ZEJULA
– If you are able to become pregnant, your doctor may perform a pregnancy test before you start treatment with ZEJULA
– You should tell your doctor right away if you become pregnant
• Are breastfeeding or plan to breastfeed
– ZEJULA may harm your baby. You should not breastfeed your baby during treatment with ZEJULA and for 1 month after
taking the last dose of ZEJULA
Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
The most common side effects of ZEJULA include the following:
If you have certain side effects, then your doctor may change your dose of ZEJULA, temporarily stop, or permanently stop treatment with ZEJULA.
These are not all the possible side effects of ZEJULA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please click for link to Prescribing Information.
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Her coworker also suggested Leanne start a cancer notebook to write down everything related to her treatment, including appointments, medications, questions, and symptoms. “That was a pretty critical thing for me — you really have to have some kind of a system,” she says. “Even now, I refer back to that notebook.”
Reaching out also helped her grow closer with friends. “Because I was feeling isolated, I asked people to call me,” Leanne says. Her former college roommate began calling every Saturday night — and continues to do so to this day. “I was completely overwhelmed,” she says. “Even though my friends were across the country, they rallied to be there for me.”
ZEJULA is a prescription medicine used for the maintenance treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy.
It is not known if ZEJULA is safe and effective in children.
ZEJULA may cause serious side effects such as bone marrow problems called myelodysplastic syndrome (MDS) or a type of blood cancer called acute myeloid leukemia (AML), which may lead to death. Symptoms of low blood cell counts may include weakness and can be a sign of serious bone marrow problems. Contact your doctor for new onset of bleeding, fever, or infection. High blood pressure is common and can become serious. Posterior Reversible Encephalopathy Syndrome (PRES) is a condition that affects the brain and may happen during treatment with ZEJULA. Tell your doctor if you have headache, vision changes, confusion, or seizure. Tell your doctor about all your medical conditions and medications, and if you are pregnant or breastfeeding or plan to be. Some common side effects include nausea, low blood cell counts, tiredness, constipation, muscle and back pain, headache, and trouble sleeping.
Please see additional Important Safety
Information below.
In addition to leaning on her family, Cherie took charge of her emotional health. “You want to take care of yourself — not just physically, but also mentally,” she says. She joined support groups, connecting with other cancer survivors and meeting women who soon became close-knit friends. “They are such a positive group of women to be surrounded by,” Cherie says. “They get what I’m going through. And they’re a great resource for information.”
Like Leanne, being involved with a community of cancer survivors inspired Cherie to become more active. “My interest, involvement, and passion for spreading awareness about ovarian cancer has grown throughout my journey,” she says.
Cherie knew that even with surgery and a positive response to chemotherapy, her cancer was likely to recur. She wanted to be as proactive as possible in her treatment. In the past, after testing positive for BRCA-1, Cherie had opted not to have surgery. Now, she says, she wants to explore every option so she knows she’s being proactive with her care. She and her doctor had discussed advancements in ovarian cancer treatments, including maintenance therapy, so she knew she had choices when it came to potentially prolonging the time before a possible recurrence.