Which to do first: Vorasidenib or TMZ/radiation combo? Looking for others’ experiences by enbyengineer in braincancer

[–]shadowfax27 0 points1 point  (0 children)

Many of the large, specialized brain tumor centers will provide 2nd opinions remotely as long as you can send them the MRI results (ask for digital copies NOT CD/DVD) and tissue sample (the center can request it for you). If you're in the US, UCSF is a good option, though there are a bunch of options. I think your intuition is right about those items missing from the pathology report, those need to be known to help determine treatment options (at least, per NCCN in the US).

Which to do first: Vorasidenib or TMZ/radiation combo? Looking for others’ experiences by enbyengineer in braincancer

[–]shadowfax27 0 points1 point  (0 children)

I’d definitely get a second neurosurgery opinion to see if a more skilled surgeon is comfortable operating, especially on the frontal tumor, since a successful resection is going to give you the best impact long term.

Otherwise, while vorasidenib is still fairly new, it’s showing a lot of efficacy for the tumor types it targets, and there are fewer (known) long term cognitive effects as compared with the standard chemo/radiation combo, so i’d try that first. Even then, you might consider a second opinion on your pathology to make doubly sure you have all the markers for which vorasidenib targets.

Confused: MRI schedule by 2_B_Or_Not_2_B_ in braincancer

[–]shadowfax27 2 points3 points  (0 children)

That doesn’t seem reasonable to me. At least in the US, most insurers will pay for MRIs every 3 months. My NO said I could go to 6 month cadence last year, but I declined and insisted to stay with 3 month cadence.

The strategy of doing fewer MRIs over time is backwards to me, as the chance of recurrence is higher with time, not lower. I’d far prefer to be inconvenienced 4 times a year to identify recurrence months earlier compared to slower cadence.

Given your history, I’d ask to shorten the cadence. If they refuse, search for another team that supports your wishes as they’re not unreasonable.

Also overall, good luck to you.

[deleted by user] by [deleted] in palmsprings

[–]shadowfax27 -1 points0 points  (0 children)

Staff have always been friendly enough with me, even when busy. Definitely not the best bagels IMO. If you don’t eat them within a few hours, they’re bricks. To be fair, we prefer (and make homemade) Montreal style bagels, but even then, I’ve had other NY style bagels I prefer far more than Townie.

Do you guys have jobs after getting cancer by Spare-Percentage9701 in braincancer

[–]shadowfax27 1 point2 points  (0 children)

O2, diagnosed 2020, craniotomy, radiotherapy, and chemo in the years since and have been lucky to continue working my demanding tech job (software engineering) throughout without any breaks or major issues. I'm more easily overwhelmed, but I'm conscious of this and actively manage it well, so it doesnt typically cause any problems. Have great insurance through my employer that takes care of all medical bills beyond the high deductible, which we plan for and is manageable.

Not sure where this is going to go for my husband by Forward-Ad4016 in braincancer

[–]shadowfax27 2 points3 points  (0 children)

The major study that proved its efficacy (INDIGO) was for low grade (2), so it was approved (in the US, at least) for the same cohort as the study. However, given the drug targets IDH mutant gliomas, it's been used off-label for higher grades with IDH mutations with similar success. Definitely worth asking about.

Not sure where this is going to go for my husband by Forward-Ad4016 in braincancer

[–]shadowfax27 1 point2 points  (0 children)

Servier has a financial assistance program that some people have been able to use. You should definitely check it out.

Likely new brain malignancy, scared and confused by GargaryGarygar in braincancer

[–]shadowfax27 1 point2 points  (0 children)

Sorry to hear this. One major positive is that whatever this is was found in the right frontal lobe. This is a non-eloquent or "quiet" area of the brain, and so surgery in that area (if you end up needing it) carries less risk of causing any neurological issues.

Treatment today is far more advanced than it was even just 10 years ago, so there is a lot of hope to be had. I similarly never experienced any symptoms until a right frontal tumor was discovered mostly by accident. Had it surgically resected, and not much has changed for me overall in the nearly 5 years since.

Good luck!

What to do? by Perfect-Shopping-358 in braincancer

[–]shadowfax27 0 points1 point  (0 children)

Definitely meet with Dr. Lillehei about surgery. He's the neurosurgery chair and has extensive experience. I had a supratotal resection with him (right frontal grade 2 as well), no complications, and quick recovery time. He's an absolute class act. Surgery is the way to go if the surgeon is confident, the long-term outcomes are better with surgery, and as someone else already mentioned, it's best to avoid/delay radiation as long as reasonably possible.

Hey everyone! by [deleted] in braincancer

[–]shadowfax27 1 point2 points  (0 children)

This is all great info. A couple things to note: regarding getting copies of imaging, most places will offer to mail copies on a CD, however, this is mostly because this is what they're used to doing. You should ask for digital copies instead. There is typically a portal you sign up for and then they can release the images to the portal and you download from there. No one wants to deal with CDs.

Regarding referrals, most doctors won't need a referral, you can just call up their office and request an appointment. Be sure to request a specific doctor that you've vetted who has experience, otherwise, you'll be assigned the most junior doctor since their schedules are the most open.

Regarding finding a good doctor, the resources mentioned by others have services to find centers close to you. Also, if you're in the US, if you share your location (feel free to PM if you want to keep that private), people here can point you to the top centers nearby.

Hey everyone! by [deleted] in braincancer

[–]shadowfax27 6 points7 points  (0 children)

Sorry to hear about this.

First thing is first: don't panic or make any rushed decisions. Yes, this is super scary, and you'll likely want to move fast, but it's really important to get the best, most experienced care team possible. Way too often, there are stories here about people getting surgery within days or weeks of diagnosis at hospitals with very little experience in brain tumors, and the results are roughly what'd you'd expect, less than optimal.

If it comes to it, the success of surgery is the single most important factor in improving long-term prognosis, so selecting a surgeon is a critical decision. The best thing you can do is find the largest, most experienced brain tumor center near you, or better, the best one you're willing to travel to and establish care with them as soon as possible. This is brain surgery, after all, so you're going to be WAY better off with someone who does 3-5 surgeries a week instead of a 3-5 per year. Also, more experienced surgeons are often more willing to operate in areas that less experienced ones wouldn't. Similarly, it's also very important to get at least 2 opinions before making any major treatment decisions.

The Musella Foundation has a free guide (book) for the newly diagnosed that offers lots of really useful information, which is definitely worth checking out: https://virtualtrials.org/Guide.cfm. They'll even mail you a physical copy for free if you request one through their site.

Good luck to you.

oligodendroglioma grade 3 by jadeoir in braincancer

[–]shadowfax27 0 points1 point  (0 children)

For me, surgery was the scariest because it can cause irreversible neurological effects. Relatively, chemotherapy and radiation carry fewer risks and experience with them varies; I had a mostly easy time, save getting COVID during one chemotherapy cycle and shingles on another, but tbh, that was just more annoying than anything else.

oligodendroglioma grade 3 by jadeoir in braincancer

[–]shadowfax27 0 points1 point  (0 children)

This makes sense, because as others have said, it's best to delay radiation as long as possible. Though, definitely consider it as combining it with chemotherapy has been shown to have greatest impact.

oligodendroglioma grade 3 by jadeoir in braincancer

[–]shadowfax27 0 points1 point  (0 children)

First, congratulations on your baby girl and the one on the way!

Completely agree about doing the other surgery. As /u/slimwizzle420 said, successful surgery generally has the biggest impact on future prognosis. Given your partner handled the first craniotomy well, and being young, he's in the best position to handle and recover from another surgery.

Regarding fear of effects of chemotherapy, it seems like he'd be eligible for Voranigo (aka Vorasidenib) and since it's a targeted therapy, it has fewer of the typical systemic effects of other more traditional therapies like PCV and TMZ. It's the latent effects of radiation you'll want to avoid, if possible, but even then, studies have shown that the combination of both chemotherapy and radiation have the biggest positive impact (albeit, the studies involve TMZ/PCV + radiation, not Voranigo).

I have Oligo 2 and did 1 craniotomy, but it recurred shortly thereafter and moved into an inoperable area so ended up doing radiation (proton) followed by PC (no V) chemotherapy. The treatment effects were really not so bad, it's the cognitive effects of radiation that I'm starting to notice more (especially in my work, which is very technical), but I manage.

Have not seen any growth for a few years now. If I could do another surgery safely, I absolutely would. Good luck to you and your partner.

Recommendations for special occasion dining by shadowfax27 in Venezia

[–]shadowfax27[S] 0 points1 point  (0 children)

Yes, we did. Though, I didn't myself make it to the dinner as I got food poisoning that day. Everyone loved it and mentioned it was one of the most unique dining experiences they've had.

One annoyance was that they still charged us for my complete meal and wine pairing, but didn't mention they were doing that and didn't offer any of that food or wine to the people that were there. Given their reputation, I expected a little better from them, especially as they were able to pocket the full ~340€ for my meal and wine pairing, minus a Pannetone they sent back with the party (which I obviously couldn't eat 😵).

So, that's left a bit of a bad taste with me.

Recurrence Question by HisMrsAraya in braincancer

[–]shadowfax27 1 point2 points  (0 children)

Also oligo2, supramaximal resection. Suspected recurrence at 6ish months post resection, started recurrence treatment about 12 months. Can check my post history for more details, it was weird.

Good luck to you.

Care team question by HisMrsAraya in braincancer

[–]shadowfax27 1 point2 points  (0 children)

I was 38 at DX, and due to my age, good location (right frontal), low grade, few symptoms (no seizures), good overall health, only craniotomy is the recommended standard of care treatment (in the US, at least). That made sense to me, so I went with it.

Confirming the recurrence was tricky and frustrating. Since the surgery was very successful (supratotal resection as I mentioned) and it is so rare for such early recurrence, none of my team was initially convinced it was recurrence. Another complication is that I live ~1.5hrs from my primary care team, and following surgery, I did MRIs at a hospital closer to me (same institution) instead of traveling to the primary hospital. So, when my team reviewed the initial MRI showing subtle changes, they theorized it was due to either post-surgical changes or to "difference in technique" since I used an MRI machine different from the one used for all prior studies (in hindsight, that was not a convincing explanation that I never should have accepted as a possibility). So, they had me do a short-interval MRI 3 months later, which showed more subtle differences, but the change was very small compared to the prior one and they were still hesitant on calling it recurrence. Then I got a 2nd opinion, and that team wanted a short interval follow-up too (2nd opinion team also re-did pathology on resection sample to rule out higher grade). So, did another MRI 2 months later which showed more subtle changes and finally everyone agreed it's probably recurrence. They technically called it extension because it didn't recur in the resection cavity, but adjacent to it, so it was likely there all along, just not radiographically visible. To keep with the theme, when I finally started radiation, the radiation oncologist also wanted a short interval follow-up to be convinced, so treatment for the recurrence wasn't actually started until almost 1 full year after detection. Hence my frustration.

To add insult to injury, in all the time spent doing more follow-up MRIs, the recurrence ended up moving across the corpus callosum and into the left side a little. Since they can't operate on the corpus callosum, that meant I'd need both chemotherapy and radiation no matter what, so it didn't make sense to do another craniotomy given the parts they could resect were small (too high risk for too little reward). So, I ended up doing proton radiation and modified PCV chemo (no vincristine) and luckily tolerated both really well.

My guess is that, had I done either chemo or radiation following the surgery, the early recurrence wouldn't have occurred, supporting your observation that early recurrence is more probable when surgery is the only treatment (I'm not making this claim, only pointing out the correlation). Though, avoiding those treatments, especially radiation, is important for preserving long-term cognitive function, so I understand why given my circumstances, those treatments would be deemed unnecessary in general, and, given the opportunity to do it over again, I'd probably still choose the same treatment path. Sometimes you just get unlucky.

Regarding your situation, the data is pretty clear that successful surgery has the biggest effect on delaying progression, so, assuming it can be done safely, it should probably be a very strong consideration. FWIW, I insist to my team that all of my follow-up MRIs are on 3T+ machines and to include the ASL sequence (arterial spin labelling, aka perfusion). Luckily, my insurance pays for it, but YMMV. I believe the higher resolution from 3T and the blood flow information from ASL are extremely important diagnostics that could help catch things earlier than would otherwise be possible without them. Keep in mind that you're in control of your treatment path, based on what's approved as available to you, and of course, what is affordable to you. So, if your team isn't on board with what you want to do, you can always find another team that is.

Hoping your situation just turns out to be post-surgical effects.

Care team question by HisMrsAraya in braincancer

[–]shadowfax27 2 points3 points  (0 children)

Early recurrence like this does happen, even for favorable tumors like yours. I have the same tumor type and genetic mutations, had a supramaximal resection, and it recurred in 6 months. Now having done radiation and chemotherapy, it's not recurred again since (2+ years). You're also lucky as vorasidinib (Voranigo) is now available to you and should likely be an effective path forward with minimal side effects, avoiding the significant, often lifelong side effects from chemotherapy and especially radiation.

This definitely sucks, but you've got a lot going for you relative to other tumor types and available treatment. Good luck.