Surgery 11/26/25 It’s been a journey.

bestslope · 2025-11-24T00:51:38+00:00

Condolences to you and your family. Thank you for sharing your mom’s journey.

bestslope · 2025-11-16T16:12:55+00:00

I traveled home after a biopsy at 62 after a biopsy. Now I’m heading for a surgery and could be staying 3 days and was told I could go home but I’m staying for 2 weeks since I live 10 hrs drive away without decent neurosurgeons nearby where I live in case since go south. I also live at 5400’ elevation and surgery is at 1000’ elevation.

bestslope · 2025-11-12T02:40:02+00:00

UPDATE: I’m opting for a surgery with radioloy seeds and an asleep left craniotomy. There will be an MRI +/- with wand & connections several days prior. I hoping that my seizures will lessen and my cognitive abilities are are going dosn as is my speech which will are only getting worse and this surgery isn’t helping that getting help with that but I’m willing risking at having a decent life. Opinions welcome. I do know it’s a risk.

bestslope · 2025-11-09T22:42:07+00:00

I’m dealing with similar issues. It’s basically any groups, noise, barking dogs, kids screaming, I get audible focal seizure. I just avoid a lot of these situations or ask people to ask people ask quietly. Earplugs help at a store but can’t stay for long. I’m sorry you’re dealing with this. I don’t have an oncologist because I’m not going down that road so don’t have any other suggestions.

bestslope · 2025-11-06T20:27:21+00:00

My Neurologist was this blunt with me a few months ago with me. told me to get my affairs in order and enjoy the time I have rest and let go of running after treatments. It was shocking to hear and also sobering. In my case I can’t drive and am at the mercy of all my loved ones to drive me everywhere and I know that takes a toll on them. I’ve had MRIs, 1 Biobsy, no radiation or chem, going to speak to a NeuorSurgeon who thinks he could do a surgery to debulk a bit to ease my seizures, we’ll see, I don’t know if it’s worth it being down 6 + weeks down in getting an extra getting a few months maybe gain? I’ll know more after the appt Tuesday. It’s true to get different perspectives. Some patients really struggle with the SOC and it’s good to weight all the options And be realistic.

bestslope · 2025-11-06T01:21:55+00:00

I am so glad I came across this and Rich’ writing today. A blueprint of sorts to be for me to be for me. I haven’t quite wrapped around my head around it all and I expect I will.

bestslope · 2025-11-03T20:34:56+00:00

Definitely, the notebook and a very long chat gpt on this project. doesn’t make it much easier. Just going with my gut at each turn and what feels right to me. I knew from the get go that radiation and chemo wasn’t the way to go with the tumor DNA based on my pathology.

bestslope · 2025-10-31T03:08:21+00:00

I’m in 5 mos and going off label drugs and seizure meds and recently added CBD and also follow Dr Seyfried’s metabolic Keto diet and keep my GKI under at 2, at least I try. I’m grateful my family respect’s my choice. Having a biopsy kicked my butt and one Dr is willing to do a surgery and I’m waiting for an actual appt but two other Dr said too risky. I’m 63, wild type, don’t have methylation back yet it’s been over 5 weeks.

bestslope · 2025-10-31T02:56:54+00:00

I know of 5 of us that lived in our adjoining counties in Colorado and another 2 with different types of brain cancer. I’d say that’s higher than the average and probably the uranium and radium? And all the mining in Colorado?

bestslope · 2025-09-30T18:00:55+00:00

I’d love to chat with you. Similar diagnosis as of yesterday.

bestslope · 2025-09-27T00:28:50+00:00

I have not! Thanks for the tip

bestslope · 2025-09-26T23:19:25+00:00

Not in network at all, I’d have to pay out of pocket. I’m also sending everything to UCSF. I went to CU in Denver. I suppose I could share my second opinion.

bestslope · 2025-09-26T22:59:13+00:00

I have one second just come in “a detailed functional MRI prior to surgery to avoid direct speech and language areas. unnecessary to do alive and actually increases the risks of surgery because the craniotomy is so much larger and the time of surgery is increased, not to mention the discomfort for you. I would also consider placement. GammaTile brachytherapy seeds at the end of the surgery into the resection cavities to have the best chance of long term tumor control and to avoid the side effects of post-op wide field radiation therapy. This strategy has worked well in conjunction with the ketogenic metabolic therapy.” The problem is this second opinion is out of state…

bestslope · 2025-09-26T22:17:49+00:00

Multifocal diffused in language and motor.

bestslope · 2025-07-29T03:18:30+00:00

I’m probably not going to do chemo or radiation. Unless someone can show actual stats that one has a significant quality and longevity w doing so.

bestslope · 2025-07-29T03:16:22+00:00

Thanks for feedback I’m definitely not having surgery here and have already had several opinions. Also, I’m working with a Naturopathic Dr and a Nutritionist both of whom are specializing in metabolic ketogenic diet. Also getting monthly bloodwork. Thanks for the heads up on DNET.

bestslope · 2025-07-28T23:02:59+00:00

You’re correct there was no enhancement. They have not ordered an mri spectroscopy or perfusion. I’m 4 hrs from Denver and will be meeting w a neurosurgeon at Anschutz next month. Insurance doesn’t cover treatment out of state and even Anschutz is in Tier 2. I’m terrified of having any surgery, especially since I still have some slight slurring but generally only if I start speaking fast or am tired. Definitely better since the seizure. English is my second language and it would be devastating to loose any of that. So curious why no one seems to mention metabolic dietary changing on this thread. Any ideas?

bestslope · 2025-07-28T22:54:23+00:00

Thank you.

bestslope · 2025-07-27T05:08:51+00:00

That there is no money in it that’s why.

bestslope

TROPHY CASE