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

Posted by pegsj3 @pegsj3, Jul 1 5:04pm

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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Hello,
I don't want to appear negative but from when this all started for me in October of 2023, I have been stubborn. While going through the initial treatment of chemo and radiation, I was told more than a few times I could/should shave my head. The medical teams were told that I refuse to give this cancer control of my life, it can fall out one hair at a time if it wants to, but I will not help it. When my treatment was done, no one could tell I lost very little hair with the radiation treatment.
When I finished the initial treatment, the oncologist I was seeing was so negative with the next treatment of the chemo pills of 5 days per month for 6 months. He was saying that I am going to suffer with the treatment. He then proceeded to tell me I will also need to have the procedure of shaving my head every few days and wear this piece on my head. He received a hell no from me. I did go elsewhere to get a 2nd opinion about the 6 months of chemo. I ended up doing the 6 months of chemo which I completed in July of last year-2024. I refused the Optune procedure with the first oncologist and where I received the 2nd opinion also knew I was not going to do it either.
Moving forward, I will most likely not get a new procedure if needed. Why, because I want to live my life for me.
Changes with what I eat (Keto was recommended by a few doctors), exercise, and of course, I took out most of the stress I used to experience. Life if good now and I hope to keep it that way.
I wish you all the best with any and all of your decisions and treatments. Enjoy life!

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@sjt10323

Hello,
I don't want to appear negative but from when this all started for me in October of 2023, I have been stubborn. While going through the initial treatment of chemo and radiation, I was told more than a few times I could/should shave my head. The medical teams were told that I refuse to give this cancer control of my life, it can fall out one hair at a time if it wants to, but I will not help it. When my treatment was done, no one could tell I lost very little hair with the radiation treatment.
When I finished the initial treatment, the oncologist I was seeing was so negative with the next treatment of the chemo pills of 5 days per month for 6 months. He was saying that I am going to suffer with the treatment. He then proceeded to tell me I will also need to have the procedure of shaving my head every few days and wear this piece on my head. He received a hell no from me. I did go elsewhere to get a 2nd opinion about the 6 months of chemo. I ended up doing the 6 months of chemo which I completed in July of last year-2024. I refused the Optune procedure with the first oncologist and where I received the 2nd opinion also knew I was not going to do it either.
Moving forward, I will most likely not get a new procedure if needed. Why, because I want to live my life for me.
Changes with what I eat (Keto was recommended by a few doctors), exercise, and of course, I took out most of the stress I used to experience. Life if good now and I hope to keep it that way.
I wish you all the best with any and all of your decisions and treatments. Enjoy life!

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So interesting you were advised to shave your head. My husband was never told to do so until he tried Optune. He did not experience hair loss from radiation or chemotherapy. He also did not use Optune, mainly because he couldn’t tolerate the wires and all. His hair grew back completely. I admire people who can manage Optune. Such a personal choice. You must walk your own path.
Good luck to all with this mean disease.

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My wife is in about the same stage of treatment, on a 4 week break after completing 6 weeks of chemotherapy and radiation. We have also been offered the Optune device. Currently my wife has a somewhat poor quality of life; unable to walk or talk. We’re not sure that the hassle factor is worth it in her individual case. If she was functioning well it might be worth it and our oncologist feels that it can extend quantity of life but we are more focused on quality of life and comfort.

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@naoj

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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@naoj I echo your statements, and our experiences seem very similar.

Novacure has been helpful, even after hours, and our designated rep checks on us every week or two.

I was concerned with the cost after our insurance changed, but they have a program, and we would only pay a tiny amount out of pocket.

The heat is the biggest issue we've found. Due to heat and perspiration, we sometimes change arrays twice a day. He works outdoors (in our yard! lol) all day, with a few breaks for nourishment and a nap.
Manipulating array placement helps with scalp irritations.
They provide a top-shelf scalp shaver, which is quick and easy to use.

We decided early to throw everything at GBM, including giving Optune a try for a couple of months before committing to it long term. You can discontinue using the device anytime after consulting with your doctor, so we gave it a go and will continue until it no longer fits either our lifestyle, our budget, or the standard of care.

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@ruthannray

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 brother had the same opinion and tried it for a month. It was not for him either. Too much loss of quality of life for him

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I know I’m a few weeks late. My husband was diagnosed with a Glioblastoma over 4 years ago. He used the Optune device. It may have been horrible to wear all the time and to put on and take off. And carry the heavy pack around. But it’s probably one of the reasons he’s still alive today. Each persons optune is specially configured to match the location of tumor. The pads that are required are wore a certain way based on where the tumor was. It’s a type of electrical field that is projected back and forth between the pads. The continual wearing of the device is said to keep the tumor from recurring right away. You have to wear the device 80 percent of the time to see results. And my husband wore his I believe for a year. He was very adamant about keeping it on… prob over 90 percent of the time. It is a medical device so some insurance companies only cover part of it.
One of the other nuisances is a rep has to come and check in on the progress all the time. They have to download data from the device and make sure you have supplies you need and ask you how it’s going. They usually make appts and come straight to your home, and the other one is making sure you call and order the pads and other supplies before you run out,
I hope this helps.

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