1. < Brain Tumor

Anyone dealing with brain cancer

Posted by butterbutt @butterbutt, Nov 13, 2024

I was diagnosed 3 4 years ago with a rare brain cancer but in remission but I think it's coming back worse because I'm losing eye sight and body pain and weakness and my appetite not good hair falling out again etc..

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kylebar | @kylebar | 1 day ago
In reply to @sitarskidel "Often, grief scars people. My whole family except one ghosted me. They don’t know what to..." + (show)
@sitarskidel

Often, grief scars people. My whole family except one ghosted me. They don’t know what to say, and plus are uncomfortable with their own mortality. I hope you have a support group or pastor who can provide meaningful help.
Family is only a blood tie. To some it is just an accident of fate, so please find your OWN support. It’s out there❤️

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I agree that some people don’t want to face their own mortality and also don’t know what to say. Interestingly though, one of the people who ghosted me and who I really was wanting to have his support was a Baptist minster for 20 years. That is what truly shocked me. I didn’t see that coming.

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sjt10323 | @sjt10323 | 20 hours ago
In reply to @adrian092 "Hello dconway, I completed the surgery, radiology and chemo at the end of December 2024. After..." + (show)
@adrian092

Hello dconway,

I completed the surgery, radiology and chemo at the end of December 2024. After that I had a gamma knife radiation procedure in early February 2025 as opposed to Optune process. The gamma knife procedure is a one-time procedure to specifically target any residual cancer cells as best as possible. My provider had prescribed the Optume but I did not find any evidence for that process which calls for wearing the equipment 18 hours a day for the rest of your life. I also read this device "could" extend your life 3-4 weeks past the regular 12-14 month life expectancy for glioblastoma patients. I'm now on my 5th of 6 months of 5 days per month treatment. I will complete the final 6th months of treatment in July. We shall see after that.
Good luck with your husbands treatments, God bless you all!

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Hello dconway and @adrian092 ,
I completed my 6 months of 5 days per month of TMZ in July 2024. The oncologist that I was seeing at the time said that I too would have to wear the device on my head daily for extended hours per day. I asked why and he did not have an answer. I refused that treatment of course and found a 2nd opinion. To this day, I never worn that device and never will.
I did have some growth earlier this year, which I was aware that it could happen. It appeared on 2 MRIs I had. However, my last appointment/MRI in the 3rd week of May, showed that the growth shrunk without any additional treatment as my current oncologist had a wait and see attitude. I was told that it was not uncommon for that to happen. It made me and my oncologist very happy.
I do wish you the best moving forward. Remember, the final decision is yours in anything you do for treatment. Take care!

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adrian092 | @adrian092 | 17 hours ago

Hello sjt10323,
Thank you for the message. I'll complete the 6 months of 5 days per month this July 2025 so I'm exactly a year behind you. Hopefully we'll be exchanging comments next July 2026.

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