San Antonio Woman's Journey On The New Ovarian Cancer Treatment Elahere
- Elahere (drug name mirvetuximab) was approved in November 2022 by the FDA for women with ovarian cancer who have stopped responding to chemotherapy and have a high level of what’s called folate-receptor alpha.
- Tracy Herbert, 52, who has been living with ovarian cancer for nearly five years, met the mirvetuximab requirements.
- “FRα” stands for Folate-Receptor Alpha, is a protein that up to 80% of ovarian cancers carry. Elahere works by attaching to the folate receptor-alpha (FRα) protein. Once inside the tumor cells, the drug releases chemotherapy, which stops the cancer cells from growing and replicating.
- The drug has side effects; including blurry vision, elevated liver enzymes, anemia, abdominal pain, nausea, and fatigue. Herbert has been able to reduce those side effects with IV hydration, anti-nausea medication, and close monitoring by her care team.
- Herbert is now living a ‘full-functioning life,’ something which she did not always have energy for on previous treatments.
“We thought it’d be very difficult, but I have the energy for them, which on a lot of chemotherapy regimens, I wouldn’t have.”
Read MoreA New Promising Ovarian Cancer Treatment Option
In August 2022, Herbert heard a podcast about what she calls a “sexy new drug” for ovarian cancer called mirvetuximab (brand name Elahere). Often referred to by doctors as “mirv.” At the time, it had not yet been approved by the Food and Drug Administration (FDA), but researchers were very excited about its effectiveness in clinical trials. “(They were) just waxing poetic about this drug and what a game changer this drug was going to be,” Herbert recalls. “So even before it had been approved by the FDA, it was on my radar and I had heard about it and I had started looking up some of the research studies on it.”
Less than a year later, Herbert was no longer responding to the combination chemotherapy. Her cancer was growing and progressing again, leaving Herbert and her doctors thinking about next steps.
“The options we were looking at were things that were so old and have been around for so long. And one I had already experienced and not had great results with,” Herbert says. “The side effects I had were so severe and I wasn’t looking forward to the possibility of taking it weekly because that’s what their new regimen would be – weekly”.
That is when she decided to bring it up.
“I literally just said, ‘What about Elahere? Do we know about my FRα status?’”
“FRα” stands for Folate-Receptor Alpha, which is a protein that up to 80% of ovarian cancers carry. Elahere works by attaching to the folate receptor-alpha (FRα) protein. Once inside the tumor cells, the drug releases chemotherapy, which stops the cancer cells from growing and replicating, doctors say.
In a clinical trial, which is intended to show how effective the drug is, more than one-third of patients (36%) receiving Elahere (who had previously been treated with a drug called bevacizumab) experienced improved progression-free survival and more than one-fourth (26%) experienced improved overall survival.
How FRα Levels Can Be Measured
Elahere was approved in November 2022 by the FDA. Herbert had done Caris testing, which looks at the molecular and genetic makeup of your tumor, just a month before. However, at the time the test did not include testing for FRα levels. So her doctor decided it was a great idea to run a new panel.
WATCH: What Is Folate-Receptor Alpha Positive Cancer?
FRα protein levels can be quantified with a few different kinds of genomic platforms, including Caris and Foundation Medicine testing. These types of tests are called immunohistochemistry (IHC), which is a special staining process that is used to interpret the molecular and genetic makeup of your tumor.
ImmunoGen, the pharmaceutical company that developed Elahere, has partnered with a cancer laboratory testing company called NeoGenomics to provide a free FRα testing program, called FR-ASSIST. Any patient who resides in the USA with a diagnosis of ovarian cancer who has not been tested for the FRα protein previously is eligible to get a free IHC test through NeoGenomics. Your oncologist may need to request this test for you by filling out a simple form.
Eligibility For Elahere
Test results typically take a couple weeks to a month and when Herbert returned to the doctor’s office, she says:
“The oncologist was more excited than I was. He walked into the examination room, and he said, ‘You are FRα positive-positive!’ He was super excited. He was delighted for me.”
Currently, to be eligible for treatment with Elahere, a patient must have very high levels (>75%) of the folate receptor-alpha (FRα). Up to 80% of new and recurrent ovarian cancers may carry this protein, but only about 35-40% of cancers that are platinum resistant, meaning they no longer respond to platinum-based chemotherapy, test for levels that high. Additionally, your cancer must no-longer be responding to platinum-based chemotherapy and you have to have received one to three prior types of chemotherapy treatment.
Herbert met all of those requirements. Once she knew that, she was nervous. Not necessarily to try out this new treatment – but moreso whether her insurance company would cover it.
“I was eligible for the drug. I was glad that I knew about the drug. I knew how successful it had been,” Herbert explains. “But then I was super anxious about my insurance company. I was super anxious that they would not grant approval, that they would want us to try other drugs first.”
Will Insurance Cover?
After her second ovarian cancer recurrence, Herbert decided it was worth taking on a cancer case manager through her insurance company, which has proven to be a great resource.
“For me she has mainly been helpful in following-up on pre-authorization for drugs and pushing them through and advocating for some of my preventative care.”
Once her pre-authorization was submitted, she called her case manager to let her know. It was approved in three days.
Side Effects From Elahere
Herbert began Elahere in July 2023. The first month, she says, was the hardest. The biggest side effect of the drug is eye toxicities, meaning blurry vision, eye pain, and vision changes. However, the drug can cause other side effects, as well, such as elevated liver enzymes, anemia, abdominal pain, nausea, and fatigue, doctors s.
“The first month, month and a half. I had trouble with my eyes. I had trouble with my stomach. I had trouble, I had trouble with everything.”
WATCH: How To Manage Elahere Side Effects
Five doses in, with the help of her doctors, the side effects more or less subsided. And because she only has to go into the clinic for the treatment every three weeks, she is now living a pretty wonderful normal life.
“I wouldn’t say it’s an easy drug that you’re just not ever going to feel any side effects and you’re going to breeze through everything,” Herbert acknowledges. “But I’ve gone with my family to the beach. I am going with my husband to the state fair this weekend. I play with my grandchildren. I go out with friends for dinner. I am living a full functioning life.”
Returning To A Sense of Normalcy
Having tried many other treatments before, Herbert has been blown away at how effective Elahere has been on her cancer.
Most significantly, Herbert was able to celebrate her son’s 20th birthday – a milestone five years ago she never fathomed she would reach.
“When I had my first recurrence, my son was in 10th grade. I made my father promise that he would move down from New York and make sure that my son graduated from high school,” Herbert recalls. “I sat at his 20th birthday thinking, I can’t believe I’m here. And there’s no reason to believe I won’t be there for his 21st birthday. There’s no reason to think I won’t be there for that too. And that’s partially because of this drug.”
Questions To Ask Your Doctor
- Has my cancer been tested for the FRα protein?
- Am I eligible for Elahere?
- What additional tests might I need?
- How much will Elahere cost me?
- Will my insurance provider cover the treatment?
Learn more about SurvivorNet's rigorous medical review process.
