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 | 4 days 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 | 3 days 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 | 3 days 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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forgetfulannie | @forgetfulannie | 2 days ago
In reply to @dconway817 "Thank you for replying. I happy to hear your husband is doing quiet well. We have..." + (show)
@dconway817

Thank you for replying. I happy to hear your husband is doing quiet well.

We have not made a decision on the Optune array yet. We had spoken with our radiation oncologist briefly and feel we need more information. How other than sweating with the arrays does he feel? How long has he been using the Optune cap? We are in Scottsdale, Arizona so not outside too much at this time of year other than the swimming pool.

I would love any other tips you could pass. Dana

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My husband adapted quickly to the Optune device. The worst part about it was having to shave the rest of his head!
He doesn't "feel" the array's impact. He feels the cords dangling, and when he gets up from his chair and forgets he is plugged into the wall, he is quickly reminded because the cord only goes so far, lol. But there is really no sensation.

When you shower, or swim in your case, you unplug from the device and put the array cords wadded up in a shower cap. It's cumbersome, but doable for sure.

It takes about 20 minutes to apply the arrays when we change them. We change them whenever they stop sticking, which varies with his activity. They recommend every 2-3 days, but we've changed them sometimes twice a day when he mows the grass and sweats profusely.

We ordered a backpack, which came right away, and recommend that instead of the "pouch" you carry or hook to a strap. All supplies come quickly, and customer service is amazing.

Our oncologist told us of patients who have seen great success, which he attributes to the Optune device. We can only hope it is successful for us.

I'm including some pictures so you get a better idea of what to expect. Note: The brochures say it is easier to wear button-up shirts. He likes his t-shirts, so we just thread the cords in their sleeve through the neck hole, easy peasy.
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1 reply
dconway817 | @dconway817 | 2 days ago
In reply to @forgetfulannie "My husband adapted quickly to the Optune device. The worst part about it was having to..." + (show)
@forgetfulannie

My husband adapted quickly to the Optune device. The worst part about it was having to shave the rest of his head!
He doesn't "feel" the array's impact. He feels the cords dangling, and when he gets up from his chair and forgets he is plugged into the wall, he is quickly reminded because the cord only goes so far, lol. But there is really no sensation.

When you shower, or swim in your case, you unplug from the device and put the array cords wadded up in a shower cap. It's cumbersome, but doable for sure.

It takes about 20 minutes to apply the arrays when we change them. We change them whenever they stop sticking, which varies with his activity. They recommend every 2-3 days, but we've changed them sometimes twice a day when he mows the grass and sweats profusely.

We ordered a backpack, which came right away, and recommend that instead of the "pouch" you carry or hook to a strap. All supplies come quickly, and customer service is amazing.

Our oncologist told us of patients who have seen great success, which he attributes to the Optune device. We can only hope it is successful for us.

I'm including some pictures so you get a better idea of what to expect. Note: The brochures say it is easier to wear button-up shirts. He likes his t-shirts, so we just thread the cords in their sleeve through the neck hole, easy peasy.

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What a wealth of information you are. Thank you so much for including the photos, they really give an idea what to expect.

Tonight was the last low dose chemo and he has 2 more radiation treatments. Then 4 weeks off and we will see. He has lost some of his appetite, and is definitely more tired. Hopeful the 4 week break will help.

Good luck and continued good thoughts and prayers to you and your husband.

Thank you again,

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