Anyone have glioblastoma, IDH Wild-type, WHO Grade 4?

Posted by gregzacek @gregzacek, Apr 7, 2025

Wife was just diagnosed with glioblastoma, IDH Wild-type, WHO Grade 4. She just had surgery 5 days ago to remove the tumor. I am now looking for treatment options worldwide. Any help is greatly appreciated.

Also looking to start a non-profit orgnization to help others.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

plousada | @plousada | Apr 21, 2025

In reply to @gregzacek "She is on twitter as brainyblondepodcast. Has some good info." + (show)

ja a encontrei no instagram. Obrigada

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nikkijomoore67 | @nikkijomoore67 | Jan 5 1:20pm

Hello
I had right temporal lobe surgery on a tumor 12/9. Surgery was successful but the tumor came back as a glioblastoma wild type nonmethalated grade 4 and I am scared. I have my radiation simulation on Wednesday and will start radiation and chemo after. Any suggestions or sharing of your story would be greatly appreciated.

jeanneoc | @jeanneoc | Jan 8 9:59am

In reply to @nikkijomoore67 "Hello I had right temporal lobe surgery on a tumor 12/9. Surgery was successful but the..." + (show)

Although I have a different type of tumor I too had craniotomy recently. How did radiation simulation go? I went through six weeks of radiation when first diagnosed. It's a short time you're in there! But having the stabilizing mask on can be rough for some, for me it was okay. Radiation made me very tired, more tired as the sessions continue, so I suggest planning on a "brain off" break or nap every day. It just helps our brains SO MUCH to sleep and rest when we can. I also took Temozolomide during my radiation and other than some constipation tolerated it very well. I kept crackers by my bed just in case of nausea but the anti nausea meds did the trick Its very overwhelming at the beginning- we developed the one day at a time mindset in my family, it helped. Sending hugs!!

jeanneoc | @jeanneoc | Jan 8 10:01am

In reply to @nikkijomoore67 "Hello I had right temporal lobe surgery on a tumor 12/9. Surgery was successful but the..." + (show)

Forgot to add my craniotomy was right temporal lobe, my surgery was mid November and Im actually almost back to usual routine, still need a daily "nap"/brain break!
🫂

nikkijomoore67 | @nikkijomoore67 | 6 days ago

In reply to @jeanneoc "Although I have a different type of tumor I too had craniotomy recently. How did radiation..." + (show)

@jeanneoc simulation went okay. I am so scared and I guess this scary part for me is the unknown. So your help and your reply has made a difference. Thank you so much.

Colleen Young, Connect Director | @colleenyoung | 1 day ago

In reply to @nikkijomoore67 "@jeanneoc simulation went okay. I am so scared and I guess this scary part for me..." + (show)

@nikkijomoore67, just checking in. Have you started treatment now? How are you doing?

nikkijomoore67 | @nikkijomoore67 | 1 day ago

Hi! Thank you for checking in. Just had my 1st proton therapy today and in about an hour will take my 1st temozolomide chemo pill 😬

nikkijomoore67 | @nikkijomoore67 | 1 day ago

In reply to @jeanneoc "Forgot to add my craniotomy was right temporal lobe, my surgery was mid November and Im..." + (show)

@jeanneoc did you have radiation/chemo?

jeanneoc | @jeanneoc | 23 hours ago

In reply to @nikkijomoore67 "@jeanneoc did you have radiation/chemo?" + (show)

@nikkijomoore67
yes 6 weeks radiation with chemo then too, almost finished chemo course but neutrophils went too low so dr said to stop it.

nikkijomoore67 | @nikkijomoore67 | 19 hours ago

Happy to hear you are feeling okay. I started the temozolomide last night and about 4 hours later had a wave of hiccups and then heavy nausea. But I was able to work through it and took the anti-nausea that I have that I was directed to take if the Compazine did not work. I feel great this morning. Round two this afternoon. Thank you again for sharing your experiences with me.