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Can anyone tell me about the Optune device for glioblastoma?
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 fail when it comes to patient satisfaction. Staff has a stanadard script usually referring you back the prescribing physician who may not have eenough experience with the device to help you. The adhesive on the rayads is hydrolytic and lose conductivity with any sweating. The batteries wear own with time, after about 6 months I got just about 1 hour out of a charge. They do not have a portable charger, so you need to take the full pelican case for backup if you are spending the night away from home. You need a Sherpa to carry the pelican case and th duffle bag of support supplies. The transistors can overheat and som night I awoke feeling like someone had put quarters on th stove and then tossed them on my scalp. I was waiting for someone to ask me” is it safe “! Sleep deprivation seemed to be its goal. The CIA could use it to aid in interrogations. I bet they have them at getmo.
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1 ReactionIt fail when it comes to patient satisfaction. Staff has a stanadard script usually referring you back the prescribing physician who may not have eenough experience with the device to help you. The adhesive on the rayads is hydrolytic and lose conductivity with any sweating. The batteries wear own with time, after about 6 months I got just about 1 hour out of a charge. They do not have a portable charger, so you need to take the full pelican case for backup if you are spending the night away from home. You need a Sherpa to carry the pelican case and th duffle bag of support supplies. The transistors can overheat and som night I awoke feeling like someone had put quarters on th stove and then tossed them on my scalp. I was waiting for someone to ask me” is it safe “! Sleep deprivation seemed to be its goal. The CIA could use it to aid in investigations. I bet they have them at getmo. They ship supplies as needed. I needed pad changes ever other day. In the en, after a year of TMZ N optune I had a recurrent tumor, now looking a clinical trial with cart, immunotherapy.
@petesfam, how kind of you to inquire about Brian. I'm tagging @pegsj3 so she sees your message.
@pegsj3, like Pete, I'd be interested to hear how you are doing.
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1 ReactionI'm scheduled to try the Optune Device--I'm being followed by Mayo. What is it about the Optune Device that lowers quality of life. I'm concerned about pain and not being able to sleep.
Were you able to wear a turban or such covering made for cancer patients over the cap of electrodes? Also, do you need a caretaker to put the electrodes on, I live alone, but I could find out if the palliative care people at one of the hospitals I live near could put them on.
My husband was diagnosed in December of 2023. Had surgery and standard of care. Started optune in March of 2024. There is a learning curve to it. We figured out a change schedule that works. My husband admits it's a pain but he is used to it now. There are a lot of helpful tips on the Optune Facebook page. He had a follow up MRI yesterday(August 2025) and it showed no tumor growth. S0 by statistics he should be dead by now. Optune has given him longer than an extra three months so it has been worth it for us. We are being followed by Mayo.
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2 ReactionsI refused this treatment, and I have no regrets. I will most likely refuse any treatment moving forward unless of course I research it thoroughly.
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1 ReactionThe wires are inconvenient and you need a battery in a pack. The array pads can be annoying. My husband could not tolerate, but others find it just fine. If you are interested and willing, give it an honest try.
My husband wore the Optune device for a little over a year. He said it did not bother him and we hope that it extended his life (you don't know for sure, you just go by the general statistics). He did not have any pain, except toward the end he developed some sores from the arrays. He took a break from wearing it for a few days and we treated the tender spots with over-the counter antibiotic cream and kept it clean. He was able to start wearing it again. I think it is worth trying. You can stop at any tine if it is too disruptive to your lifestyle.
Where do they get the figures of how many months the Optune device will extend one's life? It sounds like such a pain that an extra three months is more for others--family and friends--than for myself. Does anyone else feel this way?