One patient with glioblastoma still alive nine years later
by AllyBlue on Wed Feb 29, 2012 07:50 PM
Have any of you tried novocure/know someone who has?
by heart_and_soul on Wed Feb 29, 2012 11:07 PM
Not first hand. I've heard of a few who've had a good stretch of time with it and others for whom it did not help at all.
by hmugm9 on Thu Mar 01, 2012 03:20 AM
My mom is currently using the Novocure. She has only had it for about a month now. She is not using it on a trial, it is available commercially now.
by Gretchen67 on Thu Mar 01, 2012 02:23 PM
My brother also used Novocure. Please feel free to contact me with any questions.
We continue the march,
by karynk on Thu Mar 01, 2012 03:50 PM
There is an online group through the musella foundation for Novocure users. You can find it through their website - at virtualtrials.com
by GR8Dane on Thu Mar 01, 2012 09:18 PM
Are you looking at the device for a recurrent GBM or a newly diagnosed GBM?
The device as mentioned by others in this thread is commercially available for recurrent GBMs and in Phase III trial for newly diagnosed.
I am on the "newly diagnosed" trail.
by HelperM on Fri Mar 02, 2012 04:47 AM
We tried it and did not have any luck with it. I'm sending you a detailed private reply as I don't like to post a lot of personal information.
by dana74 on Fri Mar 02, 2012 06:05 PM
by vasco on Sun Mar 04, 2012 11:25 AM
by hmugm9 on Sun Mar 04, 2012 03:00 PM
Currently, Novocure has 6 sites in the US that provide the device. Here is the link to the sites:http://www.virtualtrials.com/novocure/findusa.cfm
The device is approved for recurrent tumors at this time. If you are newly diagnnosed, there is a trial that you can enter. My mom qualified under her first MRI post radiation / chemo which showed pseudoprogression.
The cost of the device is $17,500 / month. However, a lot of insurance companies have been paying for it once your debuctible is met for the year. My mom's is fully paid for by insurance. If your insurance doesn't pay, Novocure has patient assistance programs that will pay for it. They know that right now a lot of insurance companies haven't heard about it, so don't worry about the cost. It took us a couple months to get the approval, but we didn't pay for it out of pocket or anything.
My mom got hers in Chicago, so if you have any specific questions about that site feel free to message me. I would be more than happy to answer any other questions that you have.
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