Talking with Grandkids and Other Curious People about Optune®

When we were asked to write this post about Optune and grandkids, we jumped at the chance. We have two beautiful grandchildren, and Darrell feels rich every day of his life. Also, what self-respecting grandparents would miss an opportunity to share photos of the grandkids?


G’Pops = Optune

It seems like Optune has always been part of our granddaughters’ lives. In their experience, G’Pops (Darrell’s moniker with the grandkids) just comes attached to a backpack and a hat. Optune is all our grandbabies have ever known. The few photos we just happened to find (ha ha!), posted below, show the girls (first Nova and then little sister Ivy) interacting with Optune throughout their lives. They have always viewed equipment and hats as nothing more than some of the interesting benefits of hanging out with G’Pops.

Because Optune is typical for them, and because they are still toddlers, our granddaughters haven’t asked questions about Optune. However, we are surrogate grandparents to the children in our friends’ lives, and we’ve enjoyed answering their questions. Here are five tips we’ve developed through our own experience in talking about Optune with grandkids.

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G'Pops is not the only one to rock the fedora! (Nova, eight months)

 

Tips for talking with grandkids and other curious people about Optune

1.  Know your comfort zone.
We have the same rule with our grandkids that we had in parenting our children: No topic is off limits for conversation. That applies to Optune and GBM as well. There is no question that Darrell wouldn’t feel comfortable addressing from his own perspective. However, that might not be right for everyone. It’s good to consider the topics or limits that you feel comfortable with and to prepare a response in case a child strays outside that territory in advance. What would you say? It could be something like, “I’m not ready to talk about that yet.”

2.  Be honest and give kids just enough information.
One afternoon, Zoey (three years old) told Darrell, “You have a boo-boo on your head.” Zoey’s five-year old sister Lilly replied, “He has brain cancer!  Duh!” Kids. Gotta love how direct they are. Darrell confirmed Lilly’s conclusion and added just a little information about Optune. “Yes, I do have brain cancer,” and, showing them his arrays, “This [Optune] device helps me. It fights the cancer and I can keep enjoying my time with you.”

Zoey and Lilly accepted his answer as truthful and helpful, and the conversation moved on. They got everything they needed at the time, and they felt secure that the grown-ups in the world had a good plan for dealing with a hard thing.

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Nova thinking about where to place arrays on her own head. (Two years, seven months)

3.  Let the kids lead.
We gently find out kids’ ideas and knowledge to shape our conversations. Kids, we’ve found, are just like adults. They ask questions based on their own life experiences. The answers we give depend on the audience and the context. The older and more interested the kids are, the more information we give. Darrell always appreciates follow-up questions as well.

The questions kids (and adults) ask depend on the personal connections they draw. For instance, when adults ask about Optune, they sometimes ask if it’s like when one of their friends was monitored for brain activity. Others ask if it controls seizures, and some even use humor. One fellow asked Darrell, “Can you pick up the ballgame with that equipment?” What a great opener that line was!

We always make it a point to find out kids’ thoughts and ideas when we talk to them about the device. Even young kids know a thing or two about electricity. Knowing that helps us anticipate questions like, “Does it hurt?” or “Does it shock you?” 
Older kids tend to know a little bit more, specifically about cells and how they live and reproduce. With this, Darrell can connect to what they have learned in science class: “Optune may slow or stop cancer cells from dividing.”

4.  Everyone loves props and hands-on experiences.
Many humans learn better when we can get our hands on things. Touching Optune components seems to make the device feel familiar and normal to people instead of scary and strange. He never insists, but Darrell invites curious kids to touch the arrays on his head as he explains that the device does not hurt or shock him. “It just feels warm,” he tells them.

For the kids who ask, “Is it heavy?” Darrell loves to hand them his backpack so they can judge for themselves. It’s much more convincing than responding, “It weighs three pounds,” right?

Given the questions we receive, one thing that would be helpful for conversations with curious kids would be a tiny, prop-sized array. When we trained our friends Christine and Lennie to change arrays, Lennie exclaimed happily, “Stickers!”  We didn’t know until then that Lennie is a sticker aficionado! Wouldn’t it be great if a child could peel off the array’s cover to touch the stickiness of the hydrogel and see the disks? Our neuro-oncologist did that for us when Darrell was considering Optune, and we still appreciate the hands-on learning!

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Checking out the leads: “Black in back, right?” (Ivy, one year, two months)

5.  Invite kids to join Team Optune.
Speaking of hands-on learning, we familiarized our grandkids with the equipment, like the batteries and the charging station early. At two-and-a-half, Nova has interest in checking the battery levels by pushing a button on the battery. She also likes to push down on the batteries in the charging station to ensure that they are firmly seated. She knows to watch the charging lights to ensure that her efforts were successful.

Just as we do with the adults in our lives, we invite kids—as appropriate with their age, interest, and comfort levels—to be part of the Optune team by changing Darrell’s batteries. Of course, some kids (and frankly some adults) are uncomfortable with cancer and its treatment. For kids who are uneasy, we don’t push it. We just let them know that Optune is a good thing in our lives, and we are happy to talk about it, and are open to any questions they might have. We have found that the kids in our lives almost always find it empowering to care for a loved one and be a part of a team working together to fight cancer.

Grandparents and grandkids:  We’re in this together!
Topics: For Caregivers, Support Resources, Educational Resources
By Andrea, wife and Optune caregiver ambassador, and Darrell, husband and Optune patient ambassador

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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.