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Pleomorphic xanthoastrocytoma tumor (Pxa): help

Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)
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@bjh369

It is a real nasty beast. I was diagnosed in October with the same glio grade 4. I've done radiation and my 1st round of chemo pills (temozolomide). I will have my MRI January 17th to see if a new tumor has started setting up house, then will go on double temozolomide for 5 days with 3 weeks off. Have you looked into the new Optune device that is helping a lot of people live longer. I will start the new device and of February 2019. If you are on Facebook join a Glioblastoma group or an Optune group. Great information from others sharing. I wish your daughter good luck and send prayers her way.

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Replies to "It is a real nasty beast. I was diagnosed in October with the same glio grade..."
kodabear | @kodabear | Dec 30, 2018

@bjh369, wishing you the best! We were told about the optune device, but my wife didn’t think she would use it enough. I’m glad there are options out there. Thanks for sharing that info! I hope it works for you. Please continue sharing. We are all in this together. ATB

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 30, 2018

Welcome to Connect, @bjh369.
I thought I’d post some more information about the Optune device (wearable medical device that delivers electrical fields through the scalp) and other innovative therapies being researched:
https://www.nature.com/articles/d41586-018-06713-6
Here are a few points to keep in mind:
– The company-sponsored study enrolled only patients who were well enough to start chemo after surgery and radiation. Even for these participants, the electric fields were not a cure. Only 16 of the original 466 patients were alive by the end of the study.
https://jamanetwork.com/journals/jama/fullarticle/2475463
–The improvement is modest: The median survival for patients who were randomly assigned to use the device while getting the chemo drug temozolomide lived 21 months compared with 16 months for those assigned to receive chemo without the device.
However, the latest data show that the two-year survival rate for the full group of patients was 43 percent for those using the device while getting temozolomide, compared with 31 percent for those only receiving chemo. The five-year rate was 13 percent vs. 5 percent.
– Optune has several components. The device has a generator that can be plugged into an electrical outlet or powered by a battery and four adhesive patches taped in place on a patient's shaved scalp. Each patch has nine electrode discs.
– The cost can be prohibitive since it’s $21,000 per month. Most U.S. insurers cover it but Medicare does not. https://www.statnews.com/2017/12/19/glioblastoma-electric-fields-cap/

I have to admit that it’s exciting to know about such advancements...for a patient with a fast-growing tumor, extending life with minimal side effects can mean the world. I wish you all success and I sincerely hope you’ll keep us updated with your progress, @bjh369.

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