Optune® in Public: Getting Out There

Dennis_Smile-(1).JPG

No such thing as normal 

When I first started using Optune, I was self-conscious about it.

I used to feel awkward and uncomfortable. People would ask me what I was wearing on my head and for a while, I didn’t quite know what to tell them.

It certainly looked unusual, almost like something from a movie.

And before I started using Optune, I’d had a full head of hair. My brothers were all bald, but for me, my hair gave me my “edge.”

It wasn’t easy to shave my head and start using Optune. My pride took a hit. I remember when I was in the barber shop, the barber asked me twice if I was sure I wanted to shave it all off. I laughed, but said, “Yes!”

It wasn’t easy to get used to my new look, but what helped the most was my support system. Having my wife, daughters, and grandkids cheer me up meant a lot. The more I used Optune and the more people stared and asked me about it, the less strange it eventually became.

I became accustomed to going out in public with it.

I remember thinking one day, So what if I don’t look the same? What’s wrong with being different?

Of course, I know it’s not that simple for everyone. I certainly was uncomfortable at first. Especially when I was out and about alone. When I was with my wife or friends, I felt like people gawked less.

But there are options out there for those who might feel differently, like hats or scarves that can cover Optune. That being said, I don’t think anyone should feel like they have to hide it. Personally, I like to stand out a little.

Dennis_Candid2.JPG

A positive attitude 

Now, when strangers ask me about Optune, I just explain what it is and what it is designed to do. Most of the time, that satisfies them and I get positive comments supporting my efforts to fight this disease. I even recognize it as a good opportunity to educate others about Optune. And who better to talk about it than an Optune user himself?

Usually, I still wear a hat when I go out, but that’s to protect the arrays—not to avoid stares from people. I encourage other Optune users to be comfortable and confident when using Optune in public. A positive outlook is so important, but it will take a while to find it. It took me some time, too. But I learned from my family and friends that I don’t have to hide Optune from the world. Instead of letting the confused looks get to me, I can use Optune with pride—or, at least, set aside my pride to use it (for me, that meant losing my hair).

I’ve also learned not to worry so much about how I look. Most of the time, other people are just curious and that’s okay. Before I was diagnosed with GBM, I’d never heard of Optune either.

So instead of fearing those questions and stares, use those moments to bring a little more awareness to your fight. You just might meet a fellow warrior—or maybe a new friend.
Topics: Support Resources
By Dennis, 75, Optune patient, Oxford, MI

Connect With an Optune Buddy

Find out how a Buddy could help answer your questions.

Schedule a chat  ▶

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.