Optune reviews please

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Optune reviews please

by cjgreene159 on Sun Sep 24, 2017 08:37 PM

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My father in law was recently diagnosed with Glioma brain tumor.

He has done radiation and is continuiing to do chemo via pills.

He has been approached about this optune helmet thing and I am hoping to get more real information from REAL patients for them. They do not have internet so I am hoping to be able to show them what you can tell them!!

RE: Optune reviews please

by LukesMelissa on Thu Oct 12, 2017 03:47 PM

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Hi CJ, 

My boyfriend was DX with GBM in Feb 2017. He started Optune in August 2017. He had to get his head professionally shaved all the way down to the scalp. The Optune representative came over to our place to deliver the arrays (1-2 week supply, depending on how fast hair grows), the batteries, the power pack, an electric shaver, other accessories like Surgilast, and a traveling suitcase. The arrays apparently feel very warm to hot when the device powers on the first time. It slowly decreases, but if you were to power off the device and turn it back on, it will get warm again. It can get to the point of discomfort, and my bf kept the house at 65F. He also hated going outside when it's warm, but didn't mind people staring (which they do, because a hat, unless pulled over past the eyebrows, will still show the arrays so he just doesn't wear a hat/cap). He had to change his arrays every 2-3 days, sometimes sooner because it started electocuting him due to hair growth or sweat. You're required to shave between array changes due to this. The company is really nice about sending you the arrays within a couple of days of calling though. The rep also gathers the data from your power pack and monitors your compliance. They aren't very strict about it, but you are recommended to wear it for 18h a day, everyday. A significant problem that arose were the sores that would form underneath the arrays. Moving the array placement around it isn't really very feasible so it just hurt a lot. Our doctor suggested a wipe called Skinprep, but we're not really sure if it makes a difference since the bf decided to stop optune since it decreased his quality of life. 

Let me know if you have any other questions that I can help with. 

Best, 

Mel

RE: Optune reviews please

by RodgerMac on Fri Oct 13, 2017 01:38 AM

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We initially inquired about the Optune device during our radiation treatment. Wanting to ask questions I wrote the Optune makers, they called me back being snippy that I needed to ask my doctor those questions. Which I did, he had to contact the same people I wrote. Then the repeated phone calls from them to us became annoying. Barely finished radiation when my wife had a reoccurrence of her tumor and second surgery. Still they called and called and called. Finally I just told them to stop.. They couldn’t talk to me directly and then couldn’t answer my questions about wear times and effectiveness if not worn for the 18 hrs recommendation. They just tick me off...

RE: Optune reviews please

by MargaretS on Wed Nov 01, 2017 06:12 PM

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My 64-year old husband was diangosed with GBM (unmethylated and IDH negative) on 1/1/16. His first NO did not expect him to last a year. He had a resection, RT, immunotherapy but no chemo and has used Optune continuously since December 2016 with a compliance rate consistently over 90%.  He is doing well.  Yesterday, he biked up to the hospital for his MRI - a roundtrip of 30 miles.

Array changes, scalp treatment and keeping cool in the summer make it truly a pain, but there is no doubt in my mind that it is essential to his survival.  

You cannot argue with the numbers.  According to the latest research, 13% of Optune users were still alive after five years, as opposed to 5% using the standard protocol.

Good luck to you all.

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