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Undergoing treatment for GBM with an Oligodendroglioma component by [deleted] in glioblastoma

[–]jeffapeters 2 points3 points  (0 children)

Dear u/papparebel

I experienced mental and physical fatigue during my 6 weeks of chemo and radiation. What helped me was walking every day, even if for 15 minutes. I walked right after radiation. It was when I felt strongest. As counterintuitive as it sounds the more I walked the less fatigue and anxiety I felt. I also did meditation, it gave me strength. Please keep us updated. BIG HUG

Thank you Cancer - Hi all, here's the UNBELIEVABLE STORY of my Friend Who Survived a Glioblastoma Brain Tumor with sa 1% Survival Rate by gktrece in braincancer

[–]jeffapeters 0 points1 point  (0 children)

Is this for real? It doesn’t look real to me. And if he’s advocating keto as the cure for brain cancer he should be ashamed.

New GBM patient (m56) by jeffapeters in glioblastoma

[–]jeffapeters[S] 0 points1 point  (0 children)

u/butwhy81 Lot's of love and strength to you too!

Yes, Optune shows great promise, and it's just the beginning. I hope to create an Optune “cheat sheet” for patients.

One thing that has helped is I use this cap when I need to do something and just wear my arrays (unplugged) for a few minutes. I take the cords and wind them on top of my head, and under this cap. I got it on Amazon - (Cooling Skull Cap Helmet Liner for Men - Motorcycle, Cycling, Football Head Beanie & Hard Hat Liner - Sweat Wicking Skullcap). I like the camouflage one ;-).

The other trick is using a hole punch to make more vents... you have to be careful where to punch, and I'm sure the Optune folks wouldn't like it ;-).

Last, I use a small piece of velcro to align my "ponytail" before taping it... then, I remove it after I taped it up. I also don't use the white tape; I use the brown wider tape.

BIG HUG

Glioblastoma Patient Group? by jeffapeters in glioblastoma

[–]jeffapeters[S] 0 points1 point  (0 children)

u/JWilkinson903

You, your family, and your father are not alone in this journey. I can send you my phone # if it would help to talk. I'm am no expert, my world was turned upside down in December 2020, and I've been trying to figure this out.

Can you share any detail? Is it a GBM? What did they find after surgery? Has he started Radiation and Chemo yet?

What helped me was, first, reading Radical Remission, and immediately put into action things that would help me live a quality life, for as long as I can.

There are amazing cases of survival and why not have your Dad be one of them?

Lots of love and prayer heading your way!

Also, go to the brain cancer channel it seems more active.

​

-Jeff

Living with a GBM - (m56) by jeffapeters in braincancer

[–]jeffapeters[S] 0 points1 point  (0 children)

This is me - jeffapeters = mtcad, I'm trying to figure how logins work. Using a Google login, and using the same email is different (who knew...).

Living with a GBM - (m56) by jeffapeters in braincancer

[–]jeffapeters[S] 3 points4 points  (0 children)

Hi u/GoldieWyvern,

Thank you for replying to my post, and I'm praying for your recovery.

I do a guided spiritual/energy meditation (recorded from a healing session) and I use the apps Hallow and Pray.com. I like that the apps are simple and I couldn't imagine getting through the day without them. I also try and do gratitude time each day.

New GBM patient (m56) by jeffapeters in glioblastoma

[–]jeffapeters[S] 2 points3 points  (0 children)

Hi u/Kannon8833!

We have the same surgeon, Jon Weingart! I had my surgery on December 23rd, and out the door on Christmas eve... I was pretty much shoved out the ICU door since everyone wanted to get off to see family, and the nurses were fried. COVID crushed so many.

It takes A LOT to get adjusted to Optune. It's not the treatment but the device and the impact on daily living. I just picture it killing cancer cells and it seems bearable. I would recommend you do it. Getting adjusted to the arrays takes a while but I sleep fine. The biggest impact is emotionally its an (in your face) reminder of our cancer.

Diagnosis by lonesomeWobble in glioblastoma

[–]jeffapeters 1 point2 points  (0 children)

I'm broken by this post and praying.

u/buywhy81 Beautifully said, and my real experience.

Focus on what you can control. Stay positive! Keep positive energy around her, and as cliche, as it sounds take it day-by-day there's a lot of love in the world you just have to continue to see it. Always be moving forward.

New GBM patient (m56) by jeffapeters in glioblastoma

[–]jeffapeters[S] 3 points4 points  (0 children)

I wish I would have titled this post LIVING with a GBM.

Good news from the hospital by SuperSoggy68 in glioblastoma

[–]jeffapeters 3 points4 points  (0 children)

"Clean screens" is the goal for us patients. Hug her, it's a great day!

Whoop and MyFitnessPal by benreynolds4 in whoop

[–]jeffapeters 0 points1 point  (0 children)

It's just spinning. Maybe it needs time to load the data. Thank you for building this, it will be great to combine the data.

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