Seeing is believing: Discovering Optune after GBM diagnosis

Getting the news

My diagnosis with GBM happened in an odd way. I was losing my sight and I had to fight to be seen by my ophthalmologist! They were booked for months. But my instincts told me I shouldn’t wait, and I asked to see another doctor right away.

Once the ophthalmologist examined me, she had an inkling that something more was wrong and performed a special eye test. She looked at the results and thought I’d had a stroke so she sent me to see my primary care doctor immediately.

I had an MRI and from there, my diagnosis was quick. I had a brain tumor.
My doctor contacted one of the top neurosurgeons in Seattle to review the MRI and share the results with my husband, Pat, and me. The next day, when we arrived in her office, I had a feeling we weren’t going to get good news.

I was the last patient of the day, and we were ushered into a very quiet exam room. The neurosurgeon told me she suspected I had GBM. “Terminal” and “life expectancy” were the words I zeroed in on. Pat and I aren’t ones to fall apart and weep and wail—that’s just not who we are—but it was certainly devastating. Despite feeling confident that it was GBM, the surgeon scheduled a biopsy for Monday just to be sure.

Pat and I spent the next 2 days in deep, intimate conversation. We’ve been married for more than 35 years and have been through a lot together. We were both in the Navy, both served in the Department of Defense; we raised 4 sons together and cared for our elderly parents in their final years. We had experienced the difficult discussions that come with life and death. So that weekend, we pulled in the drawbridge and talked about the worst-case scenarios.

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We approached my brain tumor the same way we’d handled many challenges over the years in our careers and with our family. We knew we needed to make sure that all the necessary legal documents were in order, and we made a plan to meet with our attorney. We also had to figure out how to tell our sisters and our 4 sons and their partners about my diagnosis. Hearing about Optune was exciting but seeing was believing. My doctor invited us to an Optune Open House to learn more. At that event, we met a man who had been diagnosed with GBM and who had been using Optune. He and his wife told their story and shared about how they used Optune to help treat GBM. Learning from their experience was exactly what I needed!

Exploring the options

The day of my biopsy, my sisters and their husbands came to the hospital, along with a childhood friend, to keep my spirits up and to help Pat. I did my best to act cool, calm, and collected, but I was faking it and totally petrified. We met with my local oncologist and radiology team and were referred to a specialized brain tumor center in Seattle.

As soon as I was diagnosed, one of our daughters-in-law started researching and learning as much as she could about GBM and its treatments. One day, she said, “You have to ask your doctor about Optune.”

When Pat and I asked about my options, Optune didn’t come up in initial conversation, but my husband snagged an Optune pamphlet on our way out.

At our next visit, we brought it up with my oncologist, who felt I was an excellent candidate for Optune. He even said that that’s what he had planned to recommend for me, too.

Hearing about Optune was exciting but seeing was believing. My doctor invited us to an Optune Open House to learn more. At that event, we met a man who had been diagnosed with GBM and who had been using Optune. He and his wife told their story and shared about how they used Optune to help treat GBM. Learning from their experience was exactly what I needed!

After their presentation, I talked to them for a long time. They were open and honest and answered all my questions about what using Optune was like, how they managed array changes, and even how they were able to continue traveling and doing the things they wanted to do while using Optune. Talking with them alleviated my fears and by the end of the night, I was ready to get started with Optune myself.

If you're feeling stressed about the diagnosis process, I want you to know that you are not alone. I was devastated at first, but I had confidence that my healthcare team would put me on a path forward that was best for me. They say hindsight is 20/20. Today, I know that advocating for myself and keeping an open mind about my options can make all the difference.
Topics: Learning About Optune
Kate, Optune patient - 65 years old, Seattle, WA
By Kate, Optune patient • 65 years old, Seattle, WA

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What is Optune® approved to treat?

Optune is a wearable, portable, FDA-approved device indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.

Newly diagnosed GBM

If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:

Recurrent GBM

If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:

What is Optune Lua approved to treat?

Optune Lua is a wearable, portable, FDA-approved device indicated for the treatment of adult patients, with unresectable, locally advanced or metastatic, malignant pleural mesothelioma (MPM) to be used together with standard chemotherapy (pemetrexed and platinum-based chemotherapy).

Who should not use Optune for GBM or Optune Lua for MPM?

Optune for GBM and Optune Lua for MPM are not for everyone. Talk to your doctor if you have:

Do not use Optune for GBM or Optune Lua for MPM if you are pregnant or are planning to become pregnant. It is not known if Optune/Optune Lua is safe or effective during pregnancy.

What should I know before using Optune for GBM or Optune Lua for MPM?

Optune and Optune Lua should only be used after receiving training from qualified personnel, such as your doctor, a nurse, or other medical staff who have completed a training course given by Novocure®, the maker of Optune and Optune Lua.

What are the possible side effects of Optune for GBM and Optune Lua for MPM?

The most common side effects of Optune when used together with chemotherapy for GBM (temozolomide or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, seizure, and depression.

The most common side effects when using Optune alone for GBM were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers.

The most common side effects of Optune Lua when used together with chemotherapy for MPM (pemetrexed and platinum-based chemotherapy) were low red blood cell count, constipation, nausea, tiredness, chest pain, fatigue, skin irritation from device use, itchy skin, and cough.

Other potential adverse effects associated with the use of Optune Lua include: treatment related skin irritation, allergic reaction to the plaster or to the gel, electrode overheating leading to pain and/or local skin burns, infections at sites of electrode contact with the skin, local warmth and tingling sensation beneath the electrodes, muscle twitching, medical device site reaction and skin breakdown/skin ulcer.

Talk to your doctor if you have any of these side effects or questions.

Caution: Federal law restricts Optune Lua to sale by or on the order of a physician. Humanitarian Device. Authorized by Federal Law for use in the treatment of adult patients with unresectable, locally advanced or metastatic, malignant pleural mesothelioma concurrently with pemetrexed and platinum-based chemotherapy. The effectiveness of this device for this use has not been demonstrated.

Please click here to see the Optune Instructions for Use (IFU) for complete information regarding the device's indications, contraindications, warnings, and precautions.

Please click here to see the Optune Lua IFU for complete information regarding the device's indications, contraindications, warnings, and precautions.

On this site, patient and healthcare professional videos as well as all images labeled as Optune users, caregivers, or healthcare professionals depict actual patients, caregivers, and healthcare professionals. All other depictions of patients and caregivers are actor portrayals. Patient images reflect the health status of the patients at the time each photo was taken.

What is Optune approved to treat?

Optune is indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.