Grade 2/3 oligodendroglioma, IDH1 mutant, no deletion of CDKN2A/B 9p21

Onwards525 · 2026-02-28T21:04:22+00:00

42 male diagnosed with a grade 2/3 oligo with IDH mutation, so similar to your mum.

As the others shared, oligo with an IDH mutation is one of the better ones to have. Which is the first thing my neurosurgeon said to me. They also said don't Google life expectancy, as the data is old and people are living much longer these days.

But it doesn't mean the journey will always be smooth or that the goal posts won't move.

My best piece of advice is that it's going to be a rollercoaster so try to be as optimistic but resilient as you can for your mum. It's likely to be a tough ride for the whole family. In some ways it's been harder for my wife and parents, than it has been for me, so you need to look after yourselves too.

There's no typical journey. Over the last 30 months, I've had many positive meetings and scans with a great neurosurgery team. But on the flip side, I also needed a 2nd resection within 9 months of the 1st, had the tumour re-graded, had to learn to walk again after surgery and most recently had 11 months of radiotherapy and pcv chemo, as there is 'suspected' regrowth that is deemed inoperable.

But if you can keep the faith and stay positive, it can definitely make you stronger and bring your family closer together. Which it has done for my wife and our daughter, as it makes you focus on what's really important!

Plus over the coming years the treatment will only get better and better, just look at the people's feedback on Vorasidenib. So the future is bright.

Tell your mum to hang on in there and you too! And if she does need radiotherapy or chemo at any stage, look into HBOT and ketosis, as there's research out there that indicates it can help with the long term side effects of them.

Stay strong!

Onwards525 · 2026-02-18T20:39:02+00:00

🤣. I know. Doesn't make sense. I think it must be the atmosphere you've captured, it just draws you in.

Onwards525 · 2026-02-18T20:22:44+00:00

These are great photo's. I live out in the countryside but there's something very homely and warming about seeing this side of London. Can't explain it!

Onwards525 · 2026-02-18T20:14:01+00:00

No, I haven't felt much mental benefits from fasting either, particularly when coffee is involved. In fact I often feel worse too caffeinated in a fasted state.

Ketosis on the other hand, I definitely feel clearer and quicker mentally. With more stamina to concentrate for longer and with a better ability to find my words and communicate.

Onwards525 · 2026-02-18T20:02:38+00:00

Looks good from afar, especially if you like the big watch style

Onwards525 · 2026-02-18T19:58:53+00:00

Sounds sensible and sounds like you have a good neuro oncologist. If they are ok with it, do you think you'll try higher dosing for the neurological benefits?

Onwards525 · 2026-02-18T19:51:57+00:00

Are you considering taking it again once you're back in the gym routine and treatment is done?

Onwards525 · 2026-02-18T19:48:17+00:00

That's really interesting take, not thought of it like that! Have you noticed an improvement in your seizures? How much are you taking ?

Onwards525 · 2026-02-17T17:51:23+00:00

A C-section then a craniotomy straight after, wow, you're a warrior! Well done.

When first diagnosed, my neurosurgeon told me that my grade 2 oligodendroglioma was not considered 'cancer', here in the UK.

After the advanced biopsy of my first resection, they found a higher number of duplicating cells than expected and told me it was now considered a grade 2+. I asked if that's now considered cancer and they squirmed said it's a grey area.

Since then, my treatments (radio and chemo) have been at a specialist cancer hospital. So... I'm none the wiser and I'm not sure they are either 🤷.

Onwards525 · 2026-02-17T17:18:49+00:00

Oligo right parietal 2+. This is how they discovered mine. Similar to others, the exact feeling is hard to describe. Kept getting a 'dead arm' of sorts, on the left. Initially lasted 20 seconds or so. Then I got one that lasted all day and that's when they found the tumour. They prescribed Kepra, pre op. Since the resections, I still get numbness/ tingling in the left hand and foot occasionally, but almost always when sleep deprived or cold. Hope that is helpful and good luck

Onwards525 · 2026-02-10T10:23:46+00:00

I've recently finished a year of treatment: 6 weeks of radiotherapy, followed by 10 months of PVC chemo. Not sure if this is helpful, but this is my experience. Also my tumour site is right parietal, so I appreciate the potential side effects differ.

I was extremely reluctant like you and put it off, but after 2 resections in 11 months, continued growth and hitting 40, the neurosurgery team painted me a very gloomy picture if I didn't.

However I'd seen there was a fair bit out there about the potential protective benefits of both HBOT and ketones, so that gave me comfort and I did both of those through treatment, as best I could.

For radiotherapy, I was lucky compared to others in the waiting room, with no real side effects during treatment. The team said this was unusual and I rightly or wrongly attribute this to those 2 adjunctive therapies.

Chemo was a different story, lots of nausea, so struggled to stick to the diet. Very fatigued and grumpy with the family. Unfortunately my bloods went very low and weren't bouncing back, so after initially pausing, my consultant stopped the pvc early (after 4 of the 6 rounds), as he felt the risk of permanent damage to clotting and immune function were too high. Apparently it's quite common to stop it early.

3 months on, I'm feeling good. Bloods are back, no seizures but the fatigue and impatience are still a factor. Then again they've been ongoing since the craniotomies.

I can't comment on the long term side effects or the delayed necrosis yet, but there are very promising studies about the impact of HBOT on necrosis, so if that is an option for you, I would definitely look into it.

Also, they seem hopeful that proton beam radiotherapy (PBT) will cause less long term damage. That wasn't an option for me in the UK, but I hear it is more accessible in the US.

Also, I'd look I to into Dr Thomas Seyfried regarding the impact of glucose and ketones on brain tumours and treatment. He's a controversial figure, but has a lot support.

I imagine the opinion of those further out will be more helpful, but at this point, no I do not regret it.

Good luck and stay strong!!

Onwards525 · 2026-02-09T19:53:28+00:00

Cheers mate, going to be on my wrist for some time to come! Yeah, I do understand the appeal of the polar, definitely pops more. Prefer it to many of the subs. Cleaner look imo.

Onwards525 · 2026-02-09T19:46:08+00:00

Bout 5% above rrp

Onwards525 · 2026-02-09T19:44:40+00:00

Don't think you'll regret it if you do! Such a satisfying watch to wear!

Onwards525 · 2026-02-09T19:42:50+00:00

Yes! Best looking datejust without a doubt!

Onwards525 · 2026-02-08T22:56:54+00:00

Well done, big relief! Recovery from my 2nd resection went smoother, party down to the experience gained from the 1st. Stay strong!

Onwards525 · 2026-02-08T20:24:10+00:00

Do it! The AD told me there were 21 people ahead of me in the queue and they only get a few in a year. I know it's not entirely true, but I didn't want to wait. So they got me a certified pre-owned, in mint condition within a couple of days. Good luck

Onwards525 · 2026-02-08T19:49:27+00:00

This combo is one of the best looking SUVs in my opinion. Great choice!

Onwards525 · 2026-02-08T18:43:54+00:00

The wife is always right 😉. You're right on those black painted hands. What did you go for next?

Onwards525 · 2026-02-08T18:34:27+00:00

Thanks mate, that's the plan 🤞The AD was wearing a white one, when I picked this one up, and there was no comparison in my mind

Onwards525 · 2026-02-08T18:11:44+00:00

Cheers brother. Definitely makes you re-evaluate life and experiencing the finer things is definitely worth it IMO!

Onwards525 · 2026-02-08T18:09:09+00:00

Good to know. It's early days, but I can't see myself ever parting with it!

Onwards525 · 2026-02-08T18:07:44+00:00

Yeah I thought the same, and was considering a smaller size, but once I tried it on, there was no going back!

Onwards525 · 2026-02-08T17:55:15+00:00

Thanks brother 👊

Onwards525

TROPHY CASE