Crisis is an interesting thing; it’s easy to give advice and stand on the sidelines while offering direction and encouragement, but when it’s happening to you or your family, logic breaks down.
My family has had its share of collisions with crisis: the death of our first grandson, open heart surgery on our baby granddaughter, divorce, and financial challenges. We’d been dealt our share of grief, and by my count, the quota for crisis in our family was filled! Or so I’d thought …
After we had our 3 beautiful children, my (now ex-) husband and I were in complete agreement on one thing: If ever we were out sailing and a terrible storm hit, sinking the boat, we would rescue the kids before helping each other or ourselves. This agreement held true for far more than sailing.
The biggest storm roared into our lives when our middle daughter, Jeanneane, was diagnosed with glioblastoma (GBM). It was like watching her go down with the boat while I stood on shore frantically searching for a ring buoy to throw to her!
Jeanneane was born an old soul and an overachiever. She received a full-tuition scholarship to college, graduated valedictorian, then landed another full scholarship to law school. She is also unmatched in her care and concern for others.
In her late 20s/early 30s, her life was on the fast track. Travel, travel, and more travel. But in 2015, she had increasing migraines and spent weekends holed up in her apartment sleeping. She had appointments with various doctors but not one ever recommended an MRI. Subsequently, she decided to resign from her demanding job and relocate. I was relieved; maybe she could focus on her health and get those migraines under control!
After a week of preparing for the move, Jeanneane’s last task was visiting her doctor’s office. In the parking lot of the hospital, she had a seizure and was taken to the ER. An MRI showed a lime-size tumor in her brain.
I will never forget The Call from Jeanneane. Her announcement socked me in the gut. I immediately headed to the airport so I could fly out to be by her side. While I was at the airport, Jeanneane phoned again: The doctors felt certain it was cancer. When I was finally able to embrace Jeanneane in her hospital bed, we held each other close and cried.
Two days later, surgery and an agonizing 7-hour wait before Jeanneane’s neurosurgeon appeared and announced that the surgery had been successful. I thought, Okay, it’s over now. Little did I know, the GBM diagnosis was just days away. After recovering from surgery, Jeanneane started chemotherapy and radiation. We had read some dreadful statistics of GBM and were determined to fight this cancer with our entirety.
We got a reprieve from the storm at a follow-up appointment with Jeanneane's neurosurgeon. She recommended Optune®. We trusted her, so taking her recommendation, we discussed Optune with Jeanneane’s oncologist to get additional information. We were nervous about how Optune might impact Jeanneane's sleep and social life, so we also watched a MedTalk about Optune and studied the statistics before deciding with Jeanneane’s oncologist that this was the best option for Jeanneane.
One topic that comes up when treating with Optune is needing to have a shaved head. In Jeanneane's case, when you're fighting for your life, you're willing to sacrifice a lot of things and her hair was a part of that. So, she began Optune as soon as her incision healed.
We were put in touch with an nCompass™ Device Support Specialist (DSS), a part of Novocure’s support program. The day our DSS was scheduled to train us on positioning the arrays on Jeanneane’s head, I was a bundle of nerves! Our DSS was extremely helpful and informative and, to my relief, changing Jeanneane’s arrays has become easier each time.
With her doctor’s permission, Jeanneane is working again, inspiring the world with her writing and passion for life. She travels well with Optune, although we do try to book direct flights whenever possible and always request a wheelchair for early boarding. While there was an adjustment period, Jeanneane has incorporated Optune into her life.
There are some activities Jeanneane likes to do that can’t be done while using Optune, like swimming. She must be cautious not to spend too much time in the sun or do any activity that allows moisture to get on the arrays. When she’s finished, she reapplies her arrays. Jeanneane plans for these breaks in advance to maintain her high monthly usage.
Throughout our journey, there have been sweet, unexpected moments. On one occasion, a stranger decked out in a 3-piece suit at the grocery store asked if he could pray for Jeanneane. On another occasion, a 3-year-old skipped up to Jeanneane asking about Optune. Jeanneane’s eyes lit up and she whispered, "It's actually a mind reading device." She hummed, then said, "I am reading your mind, and you love chocolate!" The little girl’s eyes widened. "YES! YES!" she squealed. We laughed till our sides hurt!
Those unexpected moments with strangers and the outpouring of love from our friends have showcased the best of humanity. In a crisis, prayer and companionship convey love. I am forever indebted to our friends who have taken the helm and steered our tattered boat ahead when we grew weary. And I am grateful that Optune has been a ring buoy thrown to my daughter.
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.
If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:
If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:
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).
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.
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.
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.
Optune is indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.
