What’s on your head?”: Three ways to explain Optune GioTM

By: Taylor, Optune Gio Patient Ambassador

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 Gio was easier—and I discovered how to explain it in different ways to different people.

 

I admit that when I first began using Optune Gio, 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 Gio. I welcome the questions and conversations that people have about it. Within the first few weeks after I regained my independence using Optune Gio, 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 Gio 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 Gio 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 (then) eight-year-old understood what cancer was 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 Gio is “a special hat” that I have to wear all the time to help with my brain cancer. They became my “special hat” helpers!

 

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 Gio 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 Gio 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 Gio. And I’m happy to spread the word about this treatment.

 

When I first heard about Optune Gio, 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 Gio 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.

Back to Patient stories

Important Safety Information
 

What is Optune Gio® approved to treat?

Optune Gio 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 Gio is used together with a chemotherapy called temozolomide (TMZ) if:

  • Your cancer is confirmed by your healthcare professional AND
  • You have had surgery to remove as much of the tumor as possible

Recurrent GBM

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

  • You have tried surgery and radiation and they did not work or are no longer working AND
  • You have tried chemotherapy and your GBM has been confirmed by your healthcare professional

Who should not use Optune Gio?

Optune Gio is not for everyone. Talk to your doctor if you have:

  • An implanted medical device (programmable shunt), skull defect (missing bone with no replacement), or bullet fragment. Optune Gio has not been tested in people with implanted electronic devices, which may cause the devices not to work properly, and Optune Gio has not been tested in people with skull defects or bullet fragments, which may cause Optune Gio not to work properly 
  • A known sensitivity to conductive hydrogels (the gel on the arrays placed on the scalp like the ones used on EKGs). When Optune Gio comes into contact with the skin, it may cause more redness and itching or may rarely cause a life-threatening allergic reaction

Do not use Optune Gio if you are pregnant or are planning to become pregnant. It is not known if Optune Gio is safe or effective during pregnancy.

What should I know before using Optune Gio?

Optune Gio 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 Gio.

  • Do not use any parts that did not come with the Optune Gio Treatment Kit sent to you by Novocure or given to you by your doctor
  • Do not get the device or transducer arrays wet
  • If you have an underlying serious skin condition on the scalp, discuss with your doctor whether this may prevent or temporarily interfere with Optune Gio treatment

What are the possible side effects of Optune Gio?

Most common side effects of Optune Gio when used together with chemotherapy (temozolomide, or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, scalp irritation from the device, headache, seizure, and depression. The most common side effects when using Optune Gio alone were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers. Talk to your doctor if you have any of these side effects or questions.

 

Please click here for the Optune Gio Instructions For Use (IFU) for complete information regarding the device’s indications, contraindications, warnings, and precautions.

Novocure Websites

This website is intended for people seeking information on Optune Gio.

On this site, videos and images identified as Optune Gio users, caregivers, or healthcare professionals depict actual patients, caregivers, and healthcare professionals.

Patient images reflect the health status of the patients at the time each photo or video was taken.

 




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US-OPG-00063 v2.0 March 2024