Advocating for Yourself: A Patient’s Experience with Relapsed or Refractory Multiple Myeloma (RRMM)
Posted: March 08, 2022 | Word Count: 2,007
Kathy, a 59 year old woman with RRMM, shares her diagnosis and experiences. This is her personal story and others may be different.
Kathy, a wife, mother and avid traveler, received the shock of her life when she was diagnosed with multiple myeloma at 39 years old. Her diagnosis was uncommon, as the median age at diagnosis is typically in the mid to late 60s. Getting to this diagnosis and finding the appropriate treatment options has been a challenging road for Kathy, but throughout her experience, one thing never wavered – her resolve.
Kathy’s story began a year prior to her diagnosis – she had not been feeling well, and was prescribed a number of different medications for symptoms following three different emergency room visits; she was determined to get an answer. During her third visit to the emergency room, the doctor took a blood test, and concerned with the results, he scheduled her an appointment with an oncologist. A week later, she saw the oncologist who immediately ran additional tests – including more blood tests, a urine test, X-rays and a bone marrow biopsy. It was then that Kathy realized the gravity of her situation – and jumped “into action.” She followed up with the lab every day to obtain her results, with the hope that she would finally get some answers to what she may be facing. Shortly after she had these additional tests done, Kathy’s results came back and the oncologist diagnosed her with multiple myeloma.
Multiple myeloma is a blood cancer that starts in the plasma cells, a type of white blood cell that normally fights infections. It is the second most common blood cancer in the US, and is generally considered treatable, but not curable. More than 34,000 people are estimated to be diagnosed with multiple myeloma this year.
At the time of Kathy’s diagnosis, just over 20 years ago, resources and support for patients were limited, so she immediately called everyone she knew to gather information about the disease. Today, Kathy and her husband attribute her health to “being proactive and diving into educating” themselves. Whether it’s reading about new updates or participating in clinical trials, Kathy is adamant about taking some control of her treatment experience. Since diagnosis, Kathy has also taken every opportunity to improve her own knowledge and her expanded care team: seeking resources from patient advocacy groups, creating her own local support group, and engaging in discussions with her healthcare team about available treatment options.
When Multiple Myeloma Returns Following Treatment
Kathy and her family have valued transparency from the day of her diagnosis, because to Kathy, “The whole family has cancer. I’m just the host.” Kathy’s initial treatment worked for almost 16 years, but in 2017, just prior to her daughter’s wedding, she was told that her cancer had returned.
For people with multiple myeloma, there’s a good possibility their disease will return even after response to treatment, called relapse. For many, there’s also the possibility that their disease may be refractory to certain treatments, meaning the cancer doesn’t respond to treatment.
Kathy tried multiple treatments and combinations since her initial diagnosis, but since 2017 her disease relapsed each time, experiencing painful tumors and progression of the disease. Throughout this period of relapse and remission, Kathy made sure to remain proactive and never “let the grass grow under [her] feet.” In 2020, following a trip to Italy, she experienced her fourth relapse and she thought to herself, “There has to be another alternative.”
A Treatment Option to Help Fight Her Relapsed/Refractory Multiple Myeloma
Kathy, who is her own best advocate, took her most recent relapse as an opportunity to search for a treatment option that could work for her. Kathy spoke with her nurse practitioner about a treatment the FDA had approved for RRMM called BLENREP (belantamab mafodotin-blmf) for injection 100 mg.
BLENREP is a prescription medicine used to treat adults with multiple myeloma who have received at least 4 prior medicines to treat multiple myeloma, and their cancer has come back or did not respond to prior treatment. It is not known if BLENREP is safe and effective in children. BLENREP is approved based on patient response rate. Studies are ongoing to confirm the clinical benefit of BLENREP for this use.
Before you receive BLENREP, you must read and agree to all of the instructions in the BLENREP REMS. Before prescribing BLENREP, your healthcare provider will explain the BLENREP REMS to you and have you sign the Patient Enrollment Form. BLENREP can cause serious side effects, including eye problems.
Please see below for complete Important Safety Information.
Approved in 2020 by the FDA, BLENREP is an antibody-drug conjugate (ADC) that targets B-cell maturation antigen (BCMA). BCMA is a protein expressed on myeloma cells in all people with multiple myeloma. BLENREP works in a unique way—by identifying MM cells that express BCMA and targeting them. BLENREP then attaches to the cancerous myeloma cells and releases medication, resulting in cell death. It is possible that healthy cells may also be affected.
BLENREP is the first ADC that targets BCMA, and offers another treatment option for people with RRMM whose cancer has come back or did not respond to prior treatment.
My Multiple Myeloma May Relapse, My Resolve Won’t Waver
Kathy clearly remembers the day she started BLENREP. She was pleased to hear that by her second round of treatment, the cancer responded. This was Kathy's experience, and others’ may be different.
As part of managing treatment with BLENREP, Kathy’s physician referred her to an eye care professional to monitor her eyes before starting treatment and prior to each dose of BLENREP. Dry eyes, blurry vision, worsening vision, severe vision loss, and corneal ulcer may be experienced with BLENREP treatment, as the medicine can cause changes to the surface of the eye. Even if vision seems fine, it is required for those taking BLENREP to continue to get their eyes checked prior to treatment to monitor potential changes that can happen without symptoms and may only be seen on an eye exam. Kathy experiences dry eyes, and is taking lubricant eye drops to help manage.
Kathy and her husband have become advocates for the multiple myeloma community, even starting their own support group in their city. Kathy feels it’s important to share her story to raise awareness of this disease, and hopes it will empower others to take charge of their treatment. “Every multiple myeloma patient is different, and it’s okay to seek help and talk to others!” says Kathy.
If you or a loved one has multiple myeloma, have received at least 4 prior medicines to treat it and the cancer has come back or did not respond to prior treatment, talk to your doctor about treatment options that may be right for you, including BLENREP, and visit BLENREP.com for more information.
IMPORTANT FACTS ABOUT BLENREP
The risk information provided here is not comprehensive. To learn more, talk to your healthcare provider or pharmacist. Visit BLENREP.com or call 1-888-825-5249 to get FDA-approved product labeling, including Medication Guide.
What is BLENREP?
BLENREP is a prescription medicine used to treat adults with multiple myeloma who have received at least 4 prior medicines to treat multiple myeloma, and their cancer has come back or did not respond to prior treatment. It is not known if BLENREP is safe and effective in children.
BLENREP is approved based on patient response rate. Studies are ongoing to confirm the clinical benefit of BLENREP for this use.
What is the most important information I should know about BLENREP?
Before you receive BLENREP, you must read and agree to all of the instructions in the BLENREP REMS. Before prescribing BLENREP, your healthcare provider will explain the BLENREP REMS to you and have you sign the Patient Enrollment Form.
BLENREP can cause serious side effects, including:
Eye problems. Eye problems are common with BLENREP. BLENREP can cause changes to the surface of your eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss, and corneal ulcer. Tell your healthcare provider if you have any vision changes or eye problems during treatment with BLENREP.
- Your healthcare provider will send you to an eye specialist to check your eyes before you start treatment with BLENREP, prior to each dose of BLENREP, and for worsening symptoms of eye problems.
- Even if your vision seems fine, it is important that you get your eyes checked during treatment with BLENREP because some changes can happen without symptoms and may only be seen on an eye exam.
- You should use preservative-free lubricant eye drops at least 4 times per day during treatment with BLENREP as instructed by your healthcare provider.
- You should use caution when driving or operating machinery as BLENREP may affect your vision.
- Avoid wearing contact lenses during treatment with BLENREP unless directed by your eye specialist.
Decrease in platelets (thrombocytopenia) is common with BLENREP, and can also be serious. Platelets are a type of blood cell that help your blood to clot. Your healthcare provider will check your blood cell counts before you start treatment with BLENREP and during treatment. Tell your healthcare provider if you have bleeding or bruising during treatment with BLENREP.
Infusion reactions are common with BLENREP, and can also be serious. Tell your healthcare provider or nurse right away if you get any of the following signs or symptoms of an infusion reaction while receiving BLENREP:
- chills or shaking
- redness of your face (flushing)
- itching or rash
- shortness of breath, cough, or wheezing
- swelling of your lips, tongue, throat, or face
- feel like passing out
- feel like your heart is racing (palpitations)
The most common side effects of BLENREP include vision or eye changes such as findings on eye exam (keratopathy), decreased vision or blurred vision, nausea, low blood cell counts, fever, infusion-related reactions, tiredness, and changes in kidney or liver function blood tests.
How will I receive BLENREP?
- BLENREP will be given to you by your healthcare provider by intravenous infusion into your vein over approximately 30 minutes and is usually given every 3 weeks.
- Your healthcare provider will decide how many treatments you need and may decrease your dose, temporarily stop or completely stop treatment with BLENREP if you have serious side effects.
- If you miss any appointments, call your healthcare provider as soon as possible to reschedule your appointment.
Before receiving BLENREP, tell your healthcare provider about all of your medical conditions, including if you:
- have a history of vision or eye problems.
- have bleeding problems or a history of bleeding problems.
- are pregnant or plan to become pregnant. BLENREP can harm your unborn baby. Females who are able to become pregnant: Your healthcare provider may do a pregnancy test before you start treatment with BLENREP. You should use effective birth control during treatment with BLENREP and for 4 months after the last dose. Talk to your healthcare provider about birth control methods you can use during this time. Tell your healthcare provider if you become pregnant or think you may be pregnant during treatment with BLENREP. Males with female partners who are able to become pregnant should use effective birth control during treatment with BLENREP and for 6 months after the last dose.
- are breastfeeding or plan to breastfeed. It is not known if BLENREP passes into your breast milk. Do not breastfeed during treatment with BLENREP and for 3 months after the last dose.
- BLENREP may affect fertility in males and females. Talk to your healthcare provider if this is a concern for you.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
These are not all the possible side effects of BLENREP.
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.
Trademarks are owned by or licensed to the GSK group of companies
©2021 GSK or licensor.
BLMOGM210046 November 2021
Produced in USA.