"What's on your head?": Three ways to explain Optune®

"What's on your head?": Three ways to explain Optune®

By: Taylor, Optune patient

Interacting with the public

Coming to terms with GBM was difficult. I didn’t want to admit I had brain cancer. Accepting my diagnosis and learning to talk about my condition was an important part of the process of moving forward. Although I struggled to accept and explain GBM, talking about Optune was easier—and I discovered how to explain it in different ways to different people.
“I admit that when I first began using Optune, it was hard to get used to having something attached to my head. I had to be prepared to leave the house by making sure I had enough charged batteries to take with me for however long I'd be gone.”

I've always been a ball cap guy. I just had to get bigger hats. However, I don't try to hide Optune. I welcome the questions and conversations that people have about it. Within the first few weeks after I regained my independence using Optune, I had several people ask me, “What are you wearing?” They didn’t know what they were getting into! What they thought might be a quick answer turned into a 10-minute description of how Optune works!

People have asked me if I’m on oxygen, if I’ve had a concussion, if I have burns on my head, and many other things. Most people are really amazed at how Optune works. When I tell them, “it works by creating Tumor Treating Fields, which are electric fields that disrupt GBM cancer cell division,” they’re very impressed. 

Impact on children

The hardest part was probably at the very beginning when I told my daughters about it. I was terrified to have those conversations with my daughters. My (now) eight-year-old understands what cancer is and how scary and serious it is. I was afraid that she would ask if I was going to die. Luckily, she hasn't. But if she did, I'd tell her that I'm doing everything I can to keep it at bay. I told my daughters that Optune is “a special hat” that I have to wear all the time to help with my brain cancer. They became my “special hat” helpers!

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They’d keep an eye out to make sure that the cords on my “special hat” weren’t caught on something, like if I shut the cords in the car door. They also like to be my “battery helpers” when my alarm goes off. They take turns getting me a new battery from the charger and plug the dead one in. 

Now that our daughters are a little older, I can explain in more detail what Optune does. I tell them it is a cool piece of technology that may slow down cancer cell growth in my brain by using electric fields.

I’m also a substitute teacher at a local middle school. My students are very curious about Optune and why I’m using it. They are sincerely concerned and that’s very sweet. I’ve had comments from “good luck on your journey” to “I hope you don’t die.” Initially, I was caught off guard. I thought, “Did he really just say that?” Then I realized he didn't mean it in a negative way. He was very sweet, just didn't phrase it very eloquently. Like I said, these kids are very sweet. I appreciate the opportunity to help teach them to not be afraid to ask questions and show empathy and compassion for someone with a medical condition.

Communicating with HCPs

I’m most surprised by the questions I received from people in the medical field. I realize that many healthcare professionals—even those who work in oncology—may not have had the chance to talk with someone who uses Optune. And I’m happy to spread the word about this treatment.

When I first heard about Optune, I didn’t consider what people might say or the questions they would ask. I’m grateful to share my story and increase awareness about it wherever I go.

Sometimes it can be awkward, but I’ve learned that most questions are well-meaning. Everyone—no matter their age or profession—is genuinely curious and impressed to learn about how Optune works.

Today I welcome the questions. Thanks to my friends, family, and even conversations with strangers, I have an appreciation for life that I didn’t have before my diagnosis.

Topics: Learning About Optune, The Optune System
By Taylor, Optune® patient - 36, Grand Junction, CO

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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.