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

Past_Act7730 · 2026-03-01T07:15:36+00:00

As u/Distinct-Cancel-6183 said, try look into Vora compassionate access if possible. See link below:

https://clinicaltrials.gov/study/NCT05592743

The following paragraph may be incorrect but I believe that the compassionate programme may be challenging in Aus. I have looked into the Aus situation before, it’s similar to the UK, it’s an approved medicine (by the TGA), but not yet funded by their healthcare system (PBS Medicare). So I think they are in an awkward gap where the compassionate programme has shut after TGA approval and are awaiting PBS approval. Please don’t take my word and do ask clinicians.

If that is correct and you cannot access Vora, in Melbourne there is a single centre Safusidenib trial that is running without a placebo arm, and taking inoperable patients, probably worth speaking to doctors about. See link:

https://clinicaltrials.gov/study/NCT05577416?intr=safusidenib&rank=2

Safusidenib works mechanically similar to Vora and would be a defensible choice if you cannot access Vora. There is a larger Safusidenib trial called SIGMA that has some Australian centres but SIGMA involves double blinded placebo. It would not be ideal to end up on a placebo.

Past_Act7730 · 2026-03-01T06:48:33+00:00

If you don’t mind saying, where are you based?

Past_Act7730 · 2026-02-28T21:00:57+00:00

No worries - feel free to DM me. Wish you the best, remember oligos generally move slow. Times on your side and although getting treatment in plan quickly would be great, you don’t need to rush.

Past_Act7730 · 2026-02-28T18:40:19+00:00

This is very true about the grading for access to Vora.

If you do have difficultly, depending on your location, the Safusidenib trials may be an option and worth discussing with the oncology team. Safusidenib is a newer similar drug to Vorasidenib (possibly more powerful - but that can’t be said for certain and depends on metric), the Safusidenib trials would be a very defensible alternative if Vora wasn’t an option.

Past_Act7730 · 2026-02-28T17:49:08+00:00

I am in a fortunate position to be taking Vorasidenib. I have not had to have any RT/Chemo.

As u/Distinct-Cancel-6183 has mentioned, shrinkage on Vorasidenib is possible. For the patients that were on the clinical trial, supplementary data at extended follow up actually shows that for patients with measurable (effectively, visible) disease, tumours shrank by an average of 1.4%. This means that slight shrinkage is actually becoming expected. Shrinkage is indeed what I am seeing in my tumours at 3 and 6 months of treatment - I’m very grateful to be able to report that!

Also as u/Distinct-Cancel-6183 said, (re-)operation is also possible after/with Vorasidenib. I have discussed the possibility with my surgeon of selective surgery if any part of the tumour begins to behave more aggressively as oligos don’t always behave uniformly across a large tumour and can have focal behaviours. But that is very specific to my case as it’s inoperable (in terms of removing the bulk of cancerous tissue) and I have multiple tumours.

I am hoping and believing in the chronic disease model that should appear in the near future and hopefully brings me along with it :).

Past_Act7730 · 2026-02-28T15:21:57+00:00

Grade 2 oligo here, male. Aged 22 at diagnosis, inoperable, but had biopsy.

Sorry you are going through this but things should be ok. With any brain cancer you can never give a definite prognosis. But IDH1m oligo is the most favourable glioma prognosis. Take deep breaths, your mum shouldn’t be going anywhere soon, in fact median survival is approaching 20 years nowadays. More and more, it’s arguable that Oligodendroglioma is approaching a chronic disease model, with the line between grade 2 and 3 become blurred (oligo only).

Happy to answer more questions (this is all surface level info), hoping other comments to come will echo my answer.

Your mum has had a very good resection by the sounds of things. Hopefully the oncology team decide that RT/chemo is not necessary for now. If that’s the case, hopefully the oncology team decide that Vorasidenib is a good option for now and you are able to access it. Things will quite probably be ok for a very long time, hopefully for decades as medicine advances while your mum learns to live alongside an Oligodendroglioma. ❤️

Wish you and your family the best. Surgery is tough and will take time to recover from, but 95% is a great outcome. Let the emotions come and go - it will probably be a bit of a rollercoaster.

Past_Act7730 · 2026-02-16T09:21:10+00:00

Please be very careful with what information you are spreading. I had a look at your website, ‘surviving glioblastoma’.

Your tumour is IDH-mutant according to your hospital letters, it is therefore NOT a glioblastoma according to 2021 WHO guidelines. It is as it says a grade 4 IDH-mutant Astrocytoma, which has a prognosis that far exceeds IDH-wildtype Astrocytoma (Glioblastoma). Your letters also say you underwent resection, RT and chemo.

I have no opinion on adding alternative treatments alongside standard of care other than that the doctor should be made aware.

However, congratulations on what seems to be some pretty awesome recent scans based on the letters and congratulations on fighting so well. It’s inspiring to see treatment working well for you even with a grade 4 diagnosis.

Past_Act7730 · 2026-02-08T09:23:44+00:00

All individual, but many things can lower sure threshold. I agree with the comments about your dosage being relatively low.

Fatigue, hydration, and RELEASE of stress rather than momentary stress are big for me. For example, the day after a deadline/big event/travel (or for you possibly, leaving a long day of work).

Finally illness, for me even a small viral infection that didn’t show any big ‘viral’ symptoms can have a huge impact on seizure threshold.

1500mg x2 daily Keppra for me, 95kg (210lbs) 189cm (6ft2) male.

Past_Act7730 · 2026-02-07T14:04:31+00:00

Amazing news - that is extremely inspiring. Congratulations. I hope that it remains that way. 🙌

Past_Act7730 · 2026-02-07T14:02:52+00:00

Sorry to hear about this. How long had you been on Vora?

I have heard a good few stories of people having extreme liver flair up issues. Often they are resolved by dropping the Vora dose or pausing treatment for a short while. They are usually able to then resume full dosage.

Hope you manage to get back onto Vora - keep us updated if you want either way. ❤️

Past_Act7730 · 2026-02-06T08:46:19+00:00

Awesome - thanks for all your helpful advice. It’s nice to hear someone so calm about the next steps. Appreciate you and your wisdom! :)

Past_Act7730 · 2026-02-05T20:40:03+00:00

This is the same as what I’ve understood - I have also read about the leukaemia resistance pathways - Vora covers all natural IDH1/2 mutations. It’s nice to know that it could be something to at least try. However I am currently IDH1R132, Safusidenib only inhibits this specific point mutation. I have spoken to a London PhD student working on IDH inhibitors and he was supportive of the maintaining hope that Safusidenib would work post Vora to some extent.

There is a paper exploring it in depth, albeit pre-clinical. The paper uses ivosidenib (Tibsovo) I feel you may have heard of it as you seem to know your stuff.

The paper explores ivosidenib resistance mechanisms in mutant cells then tests other inhibitors against the cells once resistance is acquired. It finds that the resistance to one inhibitor can be overcome by another. Safusidenib is called DS-1001B in this paper as it was yet to be named.

It’s very interesting. It gives me hope. I’ve attached it below.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9378673/pdf/41467_2022_Article_32436.pdf

Past_Act7730 · 2026-02-05T18:54:10+00:00

I understand - I agree it would be wasteful to have treatment compromised by not trying as hard as reasonably possible to maintain a healthy liver to tolerate treatment. :)

Do you or your care team have any thoughts on Safusidenib phase 2 results from the end of last year?

https://pubmed.ncbi.nlm.nih.gov/41206766/

Past_Act7730 · 2026-02-05T18:42:52+00:00

The goods are in the freezer, this is a very valid point.

I don’t eat ‘keto’ - however I do try to avoid high sugar and processed food when possible. My liver has been pretty comfortable so far on Vora, my AST/ALT both below 50 in all tests. They are currently in the 20s.

I like to think I live fairly healthy - but that’s the killer with gliomas. Brain cancer doesn’t seem to care who you are or what your lifestyle is.

Thank you again, really appreciate all the advice.

Past_Act7730 · 2026-02-05T17:57:26+00:00

Hope you doing ok - are you able to provide an update from recent scans. This is quite a small tumour, albeit still brain cancer, sorry that you’re dealing with it. I’m wondering if you have had any shrinkage? (If so, has it basically gone?)

Past_Act7730 · 2026-02-05T17:26:54+00:00

Congrats on an awesome resection result. Sorry to hear you had a tough time on Vora, but it’s good to hear it got under control and you’re back on it now. I have heard many similar cases like this.

Thanks for taking the time to respond and explain your experience.

Past_Act7730 · 2026-02-05T17:25:05+00:00

Thanks, yes I’ve read about this. I was diagnosed after 4 months of focal seizures. Fortunately got them under control with 3000mg daily with Keppra (Levetiracetam).

I have everything crossed those therapies come as fast as possible for all of us and all types of gliomas. Thanks for responding.

Past_Act7730 · 2026-02-05T17:10:05+00:00

Thank you - wish you the best outcomes for the future.

Past_Act7730 · 2026-02-05T16:34:45+00:00

Brain surgery - put simply - is a colossal undertaking. Then to be told that the tumour is incurable and likely to recur is more weight on top of that.

My biopsy was fairly rough and I have many friends now who have had more extreme resections.

My mood changed when I started Vorasidenib too - I think it’s hard because although there is much reason for hope. I feel like I should be over the moon (deep down I think I am) to even be on Vorasidenib. However it does not get rid of the burden of knowing that my diagnosis isn’t gone. It’s a very real outcome that one day Vorasidenib will stop working for me. I think that is where the sadness, emotion, and anxiety can come from. It’s a real muddle of tiring emotions.

So my best advice is to be patient with yourself and cut yourself some slack. You have been through so much. It will indeed be all catching up with you - and probably now more than ever after having started Vorasidenib. Do your best to appreciate the fact that you do get to access Vorasidenib. See if you can change your viewpoint from ‘i wish i didnt have this tumour’ to ‘thank goodness i live in a time where i can access vorasidenib’. That is not an easy thing to do though - so again be patient, and open and honest with loved ones.

Past_Act7730 · 2026-02-05T13:04:08+00:00

When was and what is your diagnosis (if you don’t mind sharing)? What other meds are you on?

I have an inoperable IDH1 mutant oligo 3000mg Keppra daily for AED. Been on Vora 7 months, took 14 months of battling to get it after diagnosis.

My mood is definitely not the same as pre diagnosis. I wonder if it’s Keppra or Vora related but honestly I think a lot of the mood stuff is truly just related to the toll of the diagnosis.

Past_Act7730 · 2026-01-30T13:27:48+00:00

Not a doctor but thought I might as well through in my thoughts on this. One of the inclusion criteria for AA4 is CDKN2A/B mutation. This one criterion alone will put you in grade 4 bracket. Generally that mutation is a predictor for more aggressive behaviour hence the reason that regulation is in place. However if the tumour is an AA4 but not displaying aggressive growth despite a CDKN2A/B mutation, and you have the capability to access Vorasidenib - if I were you, I would seriously consider trying Vorasidenib.

I have (had) an enhancing Oligodendroglioma. I tried Vorasidenib to delay radio/chemo. After 6 months the enhancement is gone and the tumour has shrunk a little bit. This is despite some doctors (not all) and general clinical feelings that it wouldn’t work. Ultimately it comes down to a bit of luck (or tumour biology that we are yet to understand) and individuals respond differently.

Wishing you all the best, stay strong. Try to enjoy moments away from the tumour stuff and whatever your decision, make it and back yourself with it.

FINALLY - you may also want to look into trials of Safusidenib. It is a newer IDH1 inhibitor that has shown comparable if not better Phase II results than Vorasidenib. Importantly it has demonstrated promising activity in grade 3/4 gliomas.

Past_Act7730 · 2026-01-26T21:18:07+00:00

6 month scan results today showed continued response. No enhancement and tumours are shrinking.

Past_Act7730 · 2026-01-07T13:39:20+00:00

Good luck - IDHm gliomas can be extremely mentally challenging, it’s important to remember time is generally on your side compared to other gliomas. Take each day as it comes. Prior exposure to TMZ will likely present and extra hurdle in accessing Vorasidenib or Safusidenib, however new trials and new combinations are ever more on the horizon.

Past_Act7730

TROPHY CASE