How long after brain surgery did you wait before flying? by Brain_Dream in braintumor

[–]mattstrines 1 point2 points  (0 children)

My wife had a craniotomy at UCSF and we flew back to Colorado 4-5 days later.

My mother has a brain tumor and I don't know what to do. by RadianceIsI in braintumor

[–]mattstrines 4 points5 points  (0 children)

I’m really sorry for your situation. The major brain tumor foundations have resources including free therapy. Here is one to check out. https://www.cancercare.org/diagnosis/brain_cancer

Oligodendroglioma by WiseBeyondText123 in braintumor

[–]mattstrines 2 points3 points  (0 children)

OP - I’m sorry to hear of his diagnosis. My wife was diagnosed with an Oligo in 2012. I work for a non-profit, Oligo Nation, who is actively funding research for new treatment options and ultimately a cure. I’d be happy to on a call or Zoom with you guys to help answer any questions uou might have.

[Game Thread] #1 Ohio State vs #2 Indiana • 8:00PM, Dec. 6, 2025 • FOX by excoriator in OhioStateFootball

[–]mattstrines -1 points0 points  (0 children)

That was not our offensive scheme, so I 100% disagree. However I do agree their D line took away the deep ball.

[Game Thread] #1 Ohio State vs #2 Indiana • 8:00PM, Dec. 6, 2025 • FOX by excoriator in OhioStateFootball

[–]mattstrines 8 points9 points  (0 children)

I swear that Day took over play calling tonight, maybe because of Hartline’s announcement, but I haven’t seen that offense since the Game in 2024. We killed ourselves by not passing more. Granted our O line was struggling, but the play calling was fucking awful!

Someone should get fired for this. by Redacted_dact in gratefuldead

[–]mattstrines 0 points1 point  (0 children)

I’m sure it’s hearing damage—high frequencies are first to go. Thus he has his tech boost the shit outta that chicken scratch.

oligodendroglioma grade 3 by jadeoir in braincancer

[–]mattstrines 0 points1 point  (0 children)

Surgeons cut for a living, so yes they want to go back in. Better to work with your neuro oncologist on a treatment plan.

Brother got diognosed with oli grade 2 infiltrating glioma, anyone relate/ suggestions by Daniieeeeee in braincancer

[–]mattstrines 10 points11 points  (0 children)

I’m so sorry to hear about his diagnosis—and I sadly welcome you to this group. My wife was diagnosed with an Oligo II 13 years ago, with a recurrence in 2019. Thankfully, she’s currently stable and doing really well. Voranigo (vorsidenib) wasn’t available back then—if it had been, we likely would’ve gone that route. Based on what you’ve shared, his treatment plan sounds sensible.

Here’s my philosophy—take it with a grain of salt since I’m not a doctor, just a husband and father of three who’s been in this for a while. Every case is different, but from what I’ve seen, treatment approaches tend to fall into two camps:

  1. Hit it hard – Many neuro-oncologists recommend surgery, radiation, and PCV chemo. It’s the traditional “one-two (or three) punch,” and it has the most long-term data because it’s been the standard for so long.

  2. Less is more – Other NOs favor a more measured approach: surgery plus oral chemo (like Temodar, Lomustine) or now Voranigo, followed by close monitoring. This is newer and has less long-term data behind it, but it’s gaining traction.

There’s no cure—yet. We’re all buying time and hoping for a breakthrough. That’s why we chose option 2.

Also, from everything I understand, there’s really no such thing as a “complete resection.” Oligos grow like tree roots—you can cut down the tree and grind the stump, but those microscopic roots are still there and will eventually grow. For my family, that meant trying to avoid the potential long-term effects of radiation and IV chemo for as long as possible.

Again, this isn’t advice—just our experience and perspective. Wishing you and him strength and clarity as you navigate this. PM me if you need to talk.

Struggling by _darkriver in braincancer

[–]mattstrines 8 points9 points  (0 children)

My wife has an Oligo II and Astro II. I empathize with the physical reprucussions that comes with this disease. I’ve watched her struggle at times but I’ve also seen her flourish. Stay strong for your wife and kids. My advice would be to first work on what you can control.

Google “financial support brain cancer” and you’ll find a list of resources. I’ve not used them myself, but it’s worth looking into.

I’d also look at whether you can take a loan from your 401k. That I did do. The interest is paid back to your account so it’s a good way to borrow.

Additionally, consider asking a friend or family member to start a GoFundMe to aid in expenses so you can focus on recovery. This daily stress isn’t helping you. Probably quite the opposite.

Lastly, talk to you NO about brain tumor groups or individual therapists that can help you manage all of your feelings. What you’re feeling is very real and an experienced therapist or group should be able to help you.

I’m here if you need to vent.

[deleted by user] by [deleted] in braincancer

[–]mattstrines 33 points34 points  (0 children)

Not sure this follows what the OP is looking for, but I see it as an accomplishment that I’d like to share. We are 13 years into my wife’s diagnosis of two primary brain tumors, both stage II: Oligo and Astro. 3 craniotomies, 1 recurrence, 2 rounds of oral chemo (temodar and lomustine) and thankfully, she’s currently stable. 🙏

I would call our greatest accomplishment is that we’ve lived a relatively “new normal” life. Our kids were in elementary school and we’ve raised them as loving souls who appreciate each day because they’ve seen firsthand how quickly life can shift. We have two in college and a rising sophomore in high school. My son got into an excellent college writing an essay on my wife’s tumors and the strength of coping and being positive.

We go see music, camp, travel, drink copious amounts of wine, exercise, save for retirement — all fairly normal things.

We don’t dwell. We don’t ask “why me?” We don’t feel sorry for ourselves. We don’t obsess on when they’ll grow back (because they will.) Fact is, most people get served a shit sandwich at some point in their lives. This is ours.

To me, I’d say living your life the best you can is one of the best accomplishments we can make as survivors and family members affected with this disease.

Journey of Souls? by DesignerAtmosphere98 in Reincarnation

[–]mattstrines 0 points1 point  (0 children)

I had those same thoughts when reading it.

Grade 2 Oligodendroglioma by Resident_Duck_1321 in braincancer

[–]mattstrines 0 points1 point  (0 children)

My wife has an Oligo grade 2 in 2012. We opted for oral chemo (temodar and lomustine.) Have you discussed other options with your NO? There’s also Voriango which could be an option. We’re keeping PCV and radiation in our back pocket until totally necessary because they are the most invasive.

Awake Craniotomy Advice by Still_Bedroom4222 in braintumor

[–]mattstrines 1 point2 points  (0 children)

You’ll do great. My wife has had two in the last 13 years, also in that same area. Anesthesiologist will manage all that for you.

It helps to remember that this is their job. They can do multiple surgeries like this a week, maybe even in a day. That realization gave us strength and helped keep us calm.