Functionality with Optune®
By Susan, Optune Patient Ambassador • 3 min read
Learning that you have cancer is a life-altering experience. In many respects, I feel lucky to have such a supportive healthcare team that looks out for me and my health. The team includes my neurologist, neuro-oncologist, the nCompass® team, and my Device Support Specialist (DSS). Thanks to them, my introduction to Optune was informative and easy to navigate.
There was so much information for me to take in—not just with my diagnosis and standard of care—but learning how to use Optune as well. I worked primarily with my neuro-oncologist and social worker when the discussion of treatment with Optune came up. My social worker answered all the questions I had at my initial appointment, and she was available for any other calls I had afterward. I was given a lot of information to take home and read about Optune and I also used resources from the Novocure website prior to starting this treatment.
My DSS is my primary point of contact for any discussions regarding my Optune usage. I meet with her almost every month and when that is not possible, I download my monthly usage myself via MyLink™. She proactively communicates with me and is available by phone or text if I have any questions. Thanks to this communication, I have consistently stayed over 90% with my usage since starting Optune. My DSS and I also discuss array changes, when to change them, and how to develop a good scalp care routine. I always try to write down any questions I have for her ahead of our visits in a journal so I can keep track of everything I learn. However, my DSS does not offer any medical advice and refers me to my neuro-oncologist if I have any medical-related questions. I also call the nCompass team if I have any questions over the weekend or late in the evening.
Adjusting to alarms
When I first started using Optune, my biggest learning curve was understanding what the alarms on the device meant. My DSS went over these with me and gave me a handout to keep at my bedside to use as a resource if I needed help in a pinch. This handout assisted me in terms of understanding whether the alarm meant the device was overheating or if the alarm was connection related. I’ve become quite adept at recognizing what is happening if an alarm does sound—I can usually fix it myself, too.
On one occasion, a connection alarm went off that I could not seem to fix. I called the nCompass team, and after a quick download, they were able to determine that one of my arrays just needed to be replaced. It’s nice to know I’ve got a team behind me that has my back.
Carrying and committing
I am a member of a few social media support groups and websites where I have seen many discussions regarding tips and tricks for carrying Optune. You can also join the Opt for Optune Community Facebook Page by clicking here!
It’s always helpful to get other patients’ opinions on what works best for them!
When it comes to wrapping the cords connected to the device, I use the protective sleeve that came with it. I use white tape to keep the cords at the bottom near the junction box together as well as at the top where it zips up. If I have any loose wires on the top of my head, I use additional tape or an elastic dressing retainer to keep them down.
I am committed to having Optune work for me, and I think I have the best healthcare team to help me do so. I would strongly advise other Optune patients to take advantage of the resources and support available to them including the resources and support we share with each other!
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.