Dad’s “Special Hat”: Parenting with Optune®

Finding out I had GBM at 31 was one of the most difficult days of my life. Everything changed in that moment.

My first thought, of course, was my children. I have two daughters, and from the time they were born, my wife and I have been so excited for their future and the chance to watch them grow up. When you get a diagnosis like GBM, suddenly thinking about the future is scary because you don't know what it's going to look like and if you'll be a part of it.

Looking back, however, I would tell myself to have hope—the future isn't such a scary place to consider.

Being honest with your kids

When my oncologist first told me about Optune, I knew right away that I wanted to try it. Having young kids, I also knew that they would have a lot of questions. I had to figure out a way to explain the device so that they could understand it and not be afraid of it.

I tell my children that Daddy’s got a boo-boo in his head and this ‘special hat’ is my treatment. My younger daughter has also become my battery helper. When the battery alarms, signaling that it’s low, she gives me new batteries and says, ‘Battery helper!'

As my kids get older, they have new questions, so it's an ongoing conversation that we have as a family. I really try to answer my kids' questions as honestly and as thoroughly as I can so that they always feel comfortable talking to me about it. I don't want my kids to ever hesitate to talk to me about cancer or Optune—or anything for that matter.

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Figuring out a way to keep up

I realized early on that I couldn't let Optune hold me back from living my life to the fullest. I want to interact with my kids as much as possible, so I had to find a way to do that while wearing my backpack.

When I first started Optune, my youngest daughter was still in a crib and wearing diapers, so getting up in the middle of the night was an adjustment. I’d have to remember to take my backpack with me and just place it down while I took care of my daughter.

With Optune, I can still go on bike rides, walk the dog, and take my family camping. It just takes a little more preparation. I don't like to go on a walk with my family at 3 in the afternoon on a 90-degree day because not only will it cause Optune to overheat, but I also will get so sweaty that I’ll have to change my arrays more often. However, we can adjust and go on walks on the weekends in the morning when it's still cooler—that works best for me.

My kids are really active, and just because I have cancer, they're not slowing down. My mindset has always been that I need to figure out a way to keep up.

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Appreciating the little things

Parents: I think the biggest thing to keep in mind when you are starting out is that using Optune is an adjustment. It's okay to get frustrated and feel overwhelmed in the beginning—especially as a parent with young children. I did. I had to start out small, and there was a lot of trial and error to see what works. But now, it is second nature, and with Optune, I feel that I’m doing all I can to fight GBM.

Of course, I still worry. I worry I won’t get to see my kids play sports, graduate high school, and make me a grandpa. But when fear starts to build, I remind myself that all I can do is continue to fight. This diagnosis has made me appreciate the little things in life, and my greatest hope is to enjoy all the little moments now and to witness the amazing humans my kids are already turning out to be.

 
Topics: Daily Life with Optune, Support Resources
By Taylor, Optune patient, 38. 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.