Optune ?: Glioblastoma has grown even with chemo & radiation

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Optune ?: Glioblastoma has grown even with chemo & radiation

by jeanssister on Wed Apr 04, 2018 12:13 AM

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My sister's glioblastoma was not helped by chemo and radiation. It was never resected, either. The plan had been to start Optune next week, but with these poor results, the dr has put that on the back burner. I think this is a grave mistake. Isn't Optune designed for this very situation? Can somebody tell me their experiences?

I greatly appreciate any input. I do not trust this doctor. He's the same guy who said it didn't matter that her tumor was unmethylated. Right from the start, I had no faith.

thanks, beth

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Lesley88 on Fri Apr 20, 2018 12:05 AM

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Hi Beth,

Would your sister go for a second opinion? I am sorry as I have no experience with this cancer. She needs to know the plan and reasons for not starting Optune. There may be a valid reason he/she is not communicating.

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by jeanssister on Thu Apr 26, 2018 04:21 PM

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Hi Lesley88, Thanks for the response. We ended up going to Duke for a consult. They are not fond of Optune, and do not prescribe it. Duke was disturbed my sister was taken off all treatment after completing only 18 days of radiation & Temodar, resulting in 6 (yes, SIX) weeks of no treatment whatsoever beyond Dex, after a modified Stupp Protocol, due to radiation done in 2004 for astrocytoma grade 2. After 14 years, Duke felt she should have been given a full 6 weeks of radiation, and that following the radiation, the Temodar should have been continued, instead of nothing at all while waiting for an MRI 3 weeks after completion of radiation. These are 6 weeks she will NEVER get back. My best advice to everyone is to ask your oncologist what level of experience he or she has in treating GBMs. I doubt the local oncologist had EVER treated it. 

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Lesley88 on Thu Apr 26, 2018 11:23 PM

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Thank you for the update. Your care and persistence paid off as well as showing the need to look for a second opinion. Your sister is in very good hands. It is imperative that each cancer sufferer has a strong advocate such as yourself.  I hope she will respond well to any new protocol?

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Erinsher on Sat Apr 28, 2018 03:43 PM

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that’s strange to me, the doctor we saw at Duke thought it was a good idea for my husband, who was diagnosed in Feb. Any reason they say they don’t like it? I’d like to be completely informed before using it, as it’s a huge life-changer and hard to use. Thanks!!!

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Bugbabe_311 on Tue May 01, 2018 07:12 PM

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Hi, 

I want to encourage your husband in his use of Optune. My husband has been using it for over two years now; he is three years out with no signs of recurrence. We *thought* that optune would be a huge lifestyle adjustment. But after the first month, I can't remember life without it.  We've traveled to Hawaii, Disneyland, gotten pregnant and cared for our miracle baby. My husband works 30+ hours a week.  

It's been an excellent option for us.  Best of luck! 

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Erinsher on Tue May 01, 2018 08:08 PM

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Thank you so much! This makes me feel so much better! As you probably know, I want to do everything possible to prevent any occurrence! We just got it approved through the insurance so we will be ready as soon as possible. Thanks again!

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by Erinsher on Sun May 27, 2018 01:38 PM

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FYI the optune people are coming Tuesday! There was a lot of pricing negotiation with the insurance but we are all ready to go finally! We have to entirely shave his head today and I am a bit nervous about that but in the long run it will be okay. Fingers crossed this will work well for him.

RE: Optune ?: Glioblastoma has grown even with chemo & radiation

by jeanssister on Sun May 27, 2018 03:03 PM

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Hi Erin!  i'm really happy about Optune finally moving forward for Roger!

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