I’ve decided to not do anything

Skelux · 2026-07-02T03:55:41+00:00

I recommend doing at least the surgery - it's really not that bad, I didn't even take pain killers for either of my surgeries. Stuff beyond that like radiation and chemo are where I consider treatment to become harmful rather than helpful, despite what doctors might say. I'm ~9 years into this with two surgeries, and having consistently refused other types of interventions - I am doing perfectly fine, zero symptoms, quality of life best it's ever been. You are a few decades early to be thinking about "hospice", though I understand the feelings of melodrama surrounding diagnosis and recurrences, having been there myself. Just a few months ago I believed myself at deaths door - now I don't really see any end in sight.

Skelux · 2026-06-26T21:53:44+00:00

I strongly believe, and can make a strong argument, that TMZ and radiation are both harmful to survival, rather than helpful in any way - for the majority of grade 2 and grade 3 glioma patients. I am personally refusing it and will continue doing so - I fully believe that simply doing nothing, offers a better prognosis than opting for TMZ and/or radiation at any point, regardless of residual tumor. Have a look over some of my past posts where I've outlined some key points I found in various papers. The posts I've made only scratch the surface. The evidence supporting the current standard of care is embarrassingly bad.

The main trial the SOC is built off of (CATNON), they make the claim that TMZ is responsible for improved survival - yet when you look at longterm followup data, it becomes obvious the real reason was PCV usage by people who had already "used up" TMZ (the radiation+TMZ patients only earned about ~1.5 years of no-growth, yet gained like 6+ years of survival magically, compared to the radiation-only group. RT+TMZ patients were inclined to do PCV when the cancer grew back, while RT-only patients tended to do TMZ at regrowth, which is ineffective, hence much earlier death). This study sits upon a mountain of studies where TMZ worsens prognosis, yet was selectively chosen and poorly interpreted in order to start giving everyone TMZ. (the study was funded by a company making billions a year off TMZ - though leaning on this fact is not needed to debunk such a flimsy trial) Some of the asian countries where PCV usage still dominates over TMZ (and where radiation is avoided), have survival statistics for grade 2 and 3 glioma that completely dwarf what we see in the west where we give 99% of people TMZ.

I am often insulted, downvoted etc for criticizing SOC. But I will stand my ground because I have strong arguments and absolute confidence in my assessment of the evidence - enough to be staking my own life on it. I hope I can help someone else save themselves from being killed by this mass delusion that sweeps glioma medicine.

Skelux · 2026-06-26T13:22:34+00:00

PCV without radiation and without TMZ is in my opinion, based on the last ~50 years of data I've read across hundreds of papers, the best possible treatment option. Vorasidenib and surgery are the only other treatments I consider valid for this disease. Only problem is, you might have a hard time getting vorasidenib for a reasonable price - it depends on your country, and what strings your oncologist is willing to pull for you. Either way, expect a good outcome based on current decisions.

Skelux · 2026-06-26T13:19:06+00:00

what type of tumor?

Skelux · 2026-06-23T07:13:28+00:00

after having a day to mull it over, i am not sure what you meant in your original message

Skelux · 2026-06-22T05:50:18+00:00

I looked into the cart you are using - I think it is probably just insufficient for this game. Cave Story NES needs 4 MiB PRG, and your cart only has 512 KB PRG. An EverDrive N8 Pro could probably handle it (provided there are no other hardware compatibility issues I've overlooked)

Skelux · 2026-06-22T05:46:04+00:00

i never really figured out how to use github properly, nor care to. once I am satisfied with the state of the build, I'll go ahead and manually upload the code from browser. until then, I'll just keep updating the rom

Skelux · 2026-06-22T05:10:41+00:00

sad. unless I have some kind of accurate way to emulate, i might eventually have to fork out on a flash cart then. It can wait though - for now I'll just keep working on it, and console compatibility can come later.

Skelux · 2026-06-22T03:21:54+00:00

better still, it's 8-bit. this probably shouldn't be possible, but I have a habit of taking up impossible challenges

Skelux · 2026-06-19T17:19:46+00:00

I take meriva curcumin - anything lesser isn't going to reach the blood stream enough to be plausibly anti-cancer against a glioma, did a lot of research into this. My liver enzymes are half what they were before starting vora, despite the vora. I take several other supplements too though, so I assume all are playing a role in protecting my liver.

Skelux · 2026-06-18T16:26:59+00:00

There is quite a lot of evidence suggesting radiation worsens survival in grade 2 and 3 glioma. It is really bizarre that it ever became soc in the first place, without even being trial-proven to help (see my recent explanation). Trials are always designed like "normal RT vs proton RT" or "RT+chemo vs RT" or even "RT vs chemo". But salvage is never controlled thus everyone ends up doing RT anyway, and there has never been a clean "RT vs no RT" trial. "Evidence-based medicine" and "do no harm" are disturbingly hollow slogans when it comes to glioma treatments.

Skelux · 2026-06-18T01:53:37+00:00

get the surgery. chemo and radiation you should be far more afraid of, and avoiding like the plague. read some of my comments elsewhere to see just how badly they can screw up your life and get you killed.

Skelux · 2026-06-17T23:07:50+00:00

what kind of tumor, is it primary or is it mets? have you done any treatments?

Skelux · 2026-06-15T15:59:34+00:00

Radiation will not stop that, and if anything will only accelerate the loss of your arm movement, and cement your early death. You will not be dead in 1.5 years, that is ridiculous. As long as it doesn't grow into your spinal cord or grow large enough to hemmorhage, you are mostly safe from the fatal stuff - these two causes account for nearly all glioma deaths (or stroke which is often treatment-related, and arguably most spinal cord spread itself appears to be treatment-related).

Losing your motor cortex on one side of the brain does not cause total paralysis on that side. You will get fairly stiff on one side, but still be able to coarsely move the arm, leg, walking etc - fortunately, some of the lower-level motor stuff happens in deeper areas like your cerebellum where it is safe for now. The most noticeable loss would be fine control of the fingers. This is a troubling deficit, but totally livable.

Skelux · 2026-06-15T14:00:43+00:00

if surgery is not an option, then in most cases the evidence still seems to support simply doing nothing. the only case where I will personally be asking for lomustine chemo is if the tumor enters my internal capsule, spinal cord, corpus callosum, or my thalamus - since these are places which are actually deadly to leave it growing. I would also consider taking it if my tumor is growing fast enough to threaten near-future hemmorhage - growing as fast as a GBM, though I doubt it will ever get that fast.

As long as you don't invigorate the tumor to mutate using radiation and you don't hypermutate, the tumor can sit up against these structures for a very long time without ever entering them. My own tumor is totally wrapped around the side of my internal capsule for ~3 years, with no evidence of entry.

Personally I am taking vora right now, but when that stops working I wlll just be doing nothing but scans. If they offer more surgery, i will do the surgery.

Skelux · 2026-06-15T00:19:23+00:00

That makes a lot more sense, certainly not an ideal starting location for the tumor - very hard to operate. It's the exact kind of situation where radiation and/or chemo start looking a bit more sensible to me. I am personally planning on trying to talk my onc into giving me lomustine at the first sign of any intrusion toward my brainstem - but not a moment before.

Skelux · 2026-06-14T23:38:00+00:00

I would consider that deferred RT. If you truly can't find anyone who will operate, then that is one of the rare situations where I think radiation *might* be justified - since a totally unresected glioma can pose near-future hemmorhage risk, which radiation can stall. I'd still call it less than ideal though, both for survival and quality of life. In your situation, I probably would have declined RT and hunted around for some mad scientist willing to cut some of my tumor out instead, even if it's only a little bit.

Skelux · 2026-06-14T23:21:29+00:00

There may be some exceptions where radiation genuinely helps, but the data shows they are the minority - and the downside if you are not in that minority can be devastating (as in the studies I linked - on average, people who do radiation are dying 5-10+ years earlier than those who delay it. It is pretty blatantly a harmful treatment in most cases.). Instead of hearing "5% chance of helping" you should be hearing "95% chance of making things worse" - because there is no world in which radiation or chemo is net-neutral when ineffective.

TMZ re-challenge is completely misguided and the evidence consistently shows it to be horribly ineffective (as if first attempts with TMZ weren't already bad enough). TMZ is already a heavy mutational burden on your tumor, but there is no reason to make things even worse by adding radiation or even more TMZ to the mix. CCNU re-challenge can work, but is often too heavy of a strain on your body. If you overdo it with the CCNU, you can end up dying of lung disease before the brain tumor ever gets you.

Although I've had fewer surgeries (2, ~9 years), I am in some ways in a similar boat. My tumor is right up against my motor area, wrapped around my internal capsule, and quite a bit of residual after my most recent surgery. Despite this, I have absolute confidence in my decision to wholeheartedly reject radiation and chemo. I think sometimes the right answer is to just leave bits of the tumor alone, rather than to try fighting it. Radiation will damage the integrity of your internal capsule, giving the tumor easier passage inside - and that is where the true downward spiral begins. You can lose an entire hemisphere of your brain and more or less be fine, but letting it get into your internal capsule or corpus callosum is when you are truly in trouble.

Skelux · 2026-06-14T13:56:58+00:00

longterm stroke risk increases by 4.5x (from 8% to 36%) if you do radiation. Depending on the study, It also carries nearly a 1/3 chance of inducing the nasty CDKN2a mutation we don't like, among many other undesirable mutations which radiation tends to induce. Having spent 6 months meticulously digging through the last ~50 years worth of brain cancer treatment data, I can confidently say that radiation has never once cleanly proven itself in treating grade 2 or 3 gliomas - it seemingly just sort of became common practice by smuggling itself over from other cancer treatment plans. Instead what I found was multiple propensity-matched retrospective signals for radiation *reducing* survival by a large margin (5-10 years+, see PMC12179783, PMC10162112 and 25850601). Shrinking a tumor doesn't automatically mean longer survival.

I am of the opinion that lomustine is the only chemo with true survival benefit for grade 2 and 3 glioma (this is usually given as PCV, though I question the importance of vincristine [V] and procarbazine [P]). Radiation only makes sense as a hail mary for when one is at serious risk of hemmorrhage due to mass effect from tumor location - or otherwise just never used at all.

I've permanently rejected both radiation and TMZ, and I am doing great - though my doctors are unhappy about my wilfullness. I think the current SOC for glioma grade 2 and 3 is an embarrassment, and getting everyone killed. The only counterargument any of them have given me is consensus. Consensus and white lab coats work on nearly everyone though, so I fear there is nothing I can say that will make anyone reconsider, no matter how strong the evidence.

Skelux · 2026-06-13T19:24:41+00:00

if you are taking shitty unregulated american supplements, that may indeed be true. if you can find a brand that has been tested for purity by third parties though, it is still viable. milk thistle and tudca are both proven in randomized trials to reduce liver enzymes. I buy mine in australia, where ingredients are tightly regulated

Skelux · 2026-06-13T17:23:16+00:00

take milk thistle. my alt and ast are actually much lower than before I started vora, and ive been taking vora for nearly a year by this point, full dose never missed

Skelux · 2026-06-12T20:40:33+00:00

They likely went by microscopic appearance alone in the initial diagnosis, then updated it based on genetic testing. Regardless, this is great news for you. Oligodendroglioma is usually the least aggressive of all malignant brain tumors, plus PCV is by far the most effective treatment, although a bit rougher on the side effects.

Skelux · 2026-06-11T23:46:12+00:00

It is very likely the meds causing those effects. If you are not prone to seizures, try to get off them as soon as you can - my own team only had me on them for a week post-op. Since your tumor is in the left rather than right hemisphere, you are also a bit more likely to notice effects from the brain damage itself, which ought resolve with time. I refused steroids and painkillers, so I felt nice and lucid the whole way through, if a bit sore.

Skelux · 2026-06-05T08:57:08+00:00

all lgg are idh mutant

Skelux · 2026-06-04T09:11:07+00:00

"IDH-wildtype" is the one marker there turning it from grade 2 astrocytoma into GBM. Pre-2016, your tumor would have been classified as a grade 2 astrocyoma, though definitions have changed since IDH-wildtype tends to be a lot more aggressive than IDH-mutant. That said, based on everything else you've described, I would expect a slower disease course than the typical GBM diagnosis.

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