An Optune® patient’s firsthand experience with GBM tumor surgery
By Scott, Optune Patient Ambassador • 3 min read
A surprise diagnosis
I was diagnosed with glioblastoma shortly after my 45th birthday. Prior to my diagnosis, I experienced symptoms of brief memory loss, and I had a hard time finding the words to say what I wanted. These symptoms slowly progressed to a point where I knew I needed to see a doctor. I experienced no other symptoms, so I was confused as to what could be wrong with me. At first, I thought this sudden memory loss came with “old age”¾I had just turned 40 after all. These symptoms continued for about five years.
I finally made the decision to see a doctor after I started waking up in the morning with a tightness in my brain—kind of like when you’re getting your blood pressure taken and you feel those few seconds of tightness on your arm before the monitor loosens again. I didn’t experience this all day, but I knew something wasn’t right.
When I went to see my doctor, he took a quick MRI during our visit and before I knew it, I was being airlifted to the hospital.
I didn’t have a clue at the time that I could possibly have cancer.
Surgery and transition to Optune
Two days after arriving at the hospital, I had surgery to remove a tumor the size of a fist that had grown in my brain. There was no time to have the tumor biopsied. The neurosurgeon removed as much of the cancerous tissue as he could. My oncologist presented Optune to me as a potential treatment option after I finished radiation and chemotherapy. I didn’t really think there was any reason not to go for it. I was willing to try anything that could possibly help treat my GBM.
When I first started using Optune, it was easy for me to get tired of having it on my head all the time. This was also during a time when I was still recovering from my surgery, so I was relearning how to talk and read. Meanwhile, I was adjusting to using something on my head all the time. I think I was frustrated by everything that was happening during that time.
It took about four months for me to really get used to using Optune every day. At first, my sister helped me change my arrays each time and it was frustrating because I would have to wait for her to be available. Eventually though, I learned how to do them myself and I think that made the experience a lot more manageable.
I’m still fairly young, so I try to do some of the things with Optune I used to do before starting treatment with Optune. I like to exercise when I can, with approval from my doctor, and I try to stay on my feet as much as possible. When I do exercise, I unplug the wires from Optune but keep the arrays on my head. This way Optune doesn’t get in the way, and I don’t have to worry about changing the arrays every single time I exercise.
And while exercising this way works for me, I’d like to encourage other Optune users to just be positive. Try to do things that make you happy, despite the circumstances. Find a routine that works best for you and don’t be afraid to communicate with your doctor if you have any thoughts or concerns about your treatment.
Important Safety Information
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:
- Your cancer is confirmed by your healthcare professional AND
- You have had surgery to remove as much of the tumor as possible
If your tumor has come back, Optune 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?
Optune 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 has not been tested in people with implanted electronic devices, which may cause the devices not to work properly, and Optune has not been tested in people with skull defects or bullet fragments, which may cause Optune 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 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 if you are pregnant or are planning to become pregnant. It is not known if Optune is safe or effective during pregnancy.
What should I know before using Optune?
Optune 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.
- Do not use any parts that did not come with the Optune 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 treatment
What are the possible side effects of Optune?
The most common side effects of Optune 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 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 Instructions for Use (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.