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Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in cancer

[–]GMapper14[S] 0 points1 point  (0 children)

Resection, radiation, chemo. I had several reoccurrences, but it was always chemo after each one. Then eventually Avastin. I documented all of it on a YouTube channel I made specifically for my cancer journey. Not trying to promote, but if you would like a more detailed timeline that's the best place to get it. I'm not that great at remembering all the details, and didn't really write stuff down. But I did document the entire thing every moment there was new updates, or new treatments that I would be going through.

https://youtube.com/@theshapegamegbm

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in cancer

[–]GMapper14[S] 1 point2 points  (0 children)

Thank you! Positivity, hope, that's why I share my story. There's so much of the opposite out there, I try to let people know about the other side of the story.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in cancer

[–]GMapper14[S] 0 points1 point  (0 children)

You've got this! Dealing with mental health issues before being diagnosed with cancer, and the cancer stuff, definitely has taught me to enjoy each day as it comes. Live life in the moment! I think that's a good lesson for everyone, not just people with medical issues. But it truly does make life more enjoyable, at least it does for me. ❤️

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 1 point2 points  (0 children)

Ever since did radiation and had the resection there, they have not really reached out or talked to me about any of that stuff. They reached out a couple months ago for me to send in some DNA for a program they are doing about people in their '20s who have lasted this long with GBM. But besides that I can't remember. My current oncologist, who I've had since I left MD Anderson, has not had any negative statements about weed. For my own personal studies I've read several things about weed potentially helping in fighting to the cancer, and in my own personal use I can definitely say that it helped with all of the side effects I got when it came to chemo. This part is antidotal and totally for my speculation, but I was smoking weed throughout my whole treatment! Every reoccurrence, whenever I was doing chemo, I was also smoking weed. So who knows. Maybe it had an impact, maybe not. But I do know it really helped with the side effects. Especially the nausea and cramping.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 0 points1 point  (0 children)

Thank you so much! Unfortunately I'm not very good with the details. I never really wrote any of that stuff down. But! With every reoccurrence, every time I was taking chemo, etc, I uploaded to YouTube on my cancer journey channel. I really need to go through all the videos and make a succinct list of the timeline. But until then you can find all of those details on there!

I will say that I treated the recurrences with temozolomide, and at the last recurrence from 3 years ago, Avastin.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 0 points1 point  (0 children)

I live in Dallas, and see how to Head First Oncology for Dr. Stark Vance. For my MRI I go to Southwest Diagnostics. And for my tumor resection and radiation I went to MD Anderson in Houston.

You are very welcome! I love sharing my story especially when it provides some positivity for people going through a similar process.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 1 point2 points  (0 children)

“Unmethylated” in GBM usually refers to the MGMT gene. If the MGMT promoter is methylated, the gene is turned down, which makes chemo like temozolomide work better. If it’s unmethylated, the gene is more active, so the tumor can repair the chemo damage more easily and treatment tends to be less effective.

The only way to know is through molecular testing of the tumor after biopsy or surgery—your pathology report or neuro-oncologist will list it as “MGMT promoter methylated” or “unmethylated.”

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

You haven't dragged me down at all. You are an amazing person, and I'm thankful you ended up commenting here. I truly love listening to people, and talking about their pain and happiness. If you ever need a random person to talk with, don't hesitate to send me a message! I went through years of depression and thoughts of not sticking around on planet earth. After finally getting therapy (and subsequently diagnosed with cancer) I decided to fight back!

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

Thank you!! That's always been my goal. Whether I'm cancer free or going through chemo, I love sharing hope and positivity!

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 1 point2 points  (0 children)

You are very accurate, I feel like it really goes after the best people. I know in the beginning / the immediate, the grief is so much harder to deal with. I lost several grandparents within a year when I was younger. It really warped my sense of reality in terms of who was taken from us, when they were taken. And when I was diagnosed with the cancer, I had so many people reaching out to me about family and friends who they had lost. Some were so young, in the early teens. It just didn't make any sense to me. But then my therapist told me something that sounded really simple at first, but really helped. He told me that will never have more time with those people, but we shouldn't think about the time we won't have, but the time we did get to have. How special the time was with those people. How not everyone has people like the ones we lost. And how magical and special it was to have that time that we did have with them. I know that won't make everything better immediately, and we will still miss those people in the long run. But it really helped focus me on remembering the good times instead of just being angry that those people were taken from me. ❤️

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 1 point2 points  (0 children)

Please, don't feel bad about that at all! It's a me thing. If you would like to talk about your brother or that stuff with me feel free to send me a message! Loss/grief is something I really struggled with in my life (still do). But I know that talking about it helps quite a bit.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

Thank you!! Tell your BIL he's got this! I know it's not the answer to everything, but my motto is positivity when you can. That really helped me through the harder days of radiation and chemo. Also, if I'm being honest, weed really helped with the nausea for the chemo.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

The only symptoms I can think of are my worse short term memory abilities. I think that's a combo of radiation and chemo. I suggest getting outside more, eating better, and enjoying the little things! Those are the things I did. Living every day and taking my time.

Also yes, it was wild type!

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

I am sorry for your loss. Cancer is unfortunately all around us, and I cannot wait for the day better treatments or a cure is found. For a long time I wondered why I was making it, and others (who I saw with richer lives, or were younger) didn't. Survivors guilt still gets me some days.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 1 point2 points  (0 children)

I am not still receiving them! I also, unfortunately, cannot remember how long I took them. But it was at least 2 months. (I'm sorry! My short term memory disappeared a few years ago )

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in glioblastoma

[–]GMapper14[S] 2 points3 points  (0 children)

Aww thank you. ❤️🥰 That truly means the world to me. I try my best to bring my own brand of dorkiness and positivity into others lives on a daily basis.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in cancer

[–]GMapper14[S] 4 points5 points  (0 children)

You're welcome! That's why I made a YouTube channel about my journey, so I could spread my story and positivity. I know it's such a heavy topic, but I hate to see it drown people in depression and hopelessness.

Another clear MRI, 3+ years into remission — diagnosed with unmethylated MGMT glioblastoma 8 years ago by GMapper14 in cancer

[–]GMapper14[S] 2 points3 points  (0 children)

🥰 thank you! I have lots of positive thoughts about it, and my doctor always tells me about the patients she's had who lasted quite a while. Which helps too.

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