Can anyone tell me about the Optune device by Novacure for Glio?

Posted by pegsj3 @pegsj3, 1 day ago

My husband was diagnosed about a month and a half ago with glioblastoma. He just finished his radiation and his first round of chemo treatments. We had a video phone call the other day from Mayo Clinic that it informed us about the options of trying the Optune device by NovaCure.
It surely seems like a cumbersome device needing to be worn quite a bit. Wanting to know if anyone has any comments about this positive or negative in relation to your personal experience. We are having to make the decision in three weeks whether or not my husband should try this or not. FYI, upfront they told us that it adds an average of three months to ones life with glioblastoma.
Thank you for your help here.

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It has “arrays” Transistors that are embedded on bandages. They require replacement every few days. You will need a support person to place them. Not easy to see landmarks needed to place pads. Optune does not have a good support network. No customer satisfaction team. Device is bulky and batteries vary in how long they last. I got from 90 min to 3 hrs per battery. They supply 3 but you can request extras if you need them. You will need to tub bath as electrod gel is hydrolytic and contact is lost if head sweats or get other moisture. They have a transformer to use at night so you are not needing to change batteries.

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If the patient has any cognitive difficulties, Optum is impossible. My husband tried, but when he slept, he was always messing with the arrays. It just was not an option for him.

I think it really falls down to quality of life determination. If three more months of life is worth wearing this device 75% of your remaining life, then you should wear it. If it detracts from your quality of life, it’s not going to make you happy.

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My husband has been wearing the Optune device for over a year (diagnosed with glioblastoma in April 2024, surgery, radiation, 12 months of Chemo). He wears it around 97% of his time and seems not too bothered . He can take a shower with cap (illustrations on how to keep head dry). We have had good support and excellent response when ordering new equipment as needed. Perhaps it depends on the support person you are assigned? The literature suggests that Optune worn at least 75% of the time adds six months to survival rate. Although this is a generalization and each individual is different. We were given four batteries as well as a transformer. The batteries have lasted at least 3 hours each. We were provided a shoulder strap and a backpack to carry the device when active (although my husband prefers to carry it around in his hand). As a caregiver, I have not minded changing the arrays every three days... it gets simpler with time. I do wonder if I would be as patient with the inconvenience as my husband. It is a lifestyle choice and not for everyone. But we have had overall positive experience.

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