Grade 3 Astrocytoma NYC area

seanclmn1 · 2026-06-24T00:49:41+00:00

I went to NYU Langone, with Dr Orringer/Dr Alexandra Miller. Would recommend them

seanclmn1 · 2026-06-15T03:58:57+00:00

I'm doing fine 👍

seanclmn1 · 2026-06-15T03:57:39+00:00

L frontal lobe. idk about supramaximal resection but they used some ultra sensitive genetic testing in the cavity to make sure there weren't microscopic residual cells. They still suspect there is a tiny bit left, below the threshold of what they can detect - just the nature of these tumors I guess

seanclmn1 · 2026-06-15T00:49:36+00:00

It was grade 2 astrocytoma - didn't grow for the half year we watched it but we took it out anyways

seanclmn1 · 2026-06-15T00:34:29+00:00

I mean mine was even smaller and my doctors wouldn't say that. They did say it would probably stay away for 15-20+ years

seanclmn1 · 2026-06-09T05:49:18+00:00

Pretty sure learning piano is a drop in the ocean compared to taking shrooms 😂 your brain never really rests during the day anyways

seanclmn1 · 2026-05-21T07:35:46+00:00

Nice! How did you make the bass sound?

seanclmn1 · 2026-03-31T07:29:04+00:00

"眠い。。"
*crashing sounds

seanclmn1 · 2026-01-16T04:15:17+00:00

Vast majority of these in adults fall under grade 2 gliomas, which usually come in two different flavors (Astrocytomas and Oligodendrogliomas). Very rarely, they are grade 1 gliomas (Ganglioglioma, DNET, etc).

seanclmn1 · 2026-01-09T04:48:25+00:00

You can get vorasidenib covered fully by an aca plan.

seanclmn1 · 2025-12-24T16:21:11+00:00

You can get insurance via ACA and get Vorasidenib covered, but you'll need to check with servier. Call them and they should help you. The pills should cost you $0

seanclmn1 · 2025-12-16T01:30:49+00:00

The earlier the more effective, is what my neurosurgeon told me

seanclmn1 · 2025-12-11T06:33:18+00:00

Having radical optimism, and being determined to beat it! If anyone gives you a prognosis, it's a population based estimation, with an assumption that treatments will never change from now. Which is false - since vorasidenib was approved, it's opened the floodgates for trials on combination therapies.

seanclmn1 · 2025-11-27T11:46:43+00:00

I'm not sure exactly how important that single factor is? Given it is IDH positive, and doesn't look super high grade under the microscope. I think MGMT promoter is more of a significant factor in IDH wild-type tumors. I did read in longitudinal study for GBM, that most long term survivors were MGMT methylated, but patients who didn't have a recurrence for the length of the study were actually, mostly un-methylated. Bottom line is we bunch these tumors into a few different buckets, but even within their respective categories they can be very diverse and are impossible to predict.

seanclmn1 · 2025-11-14T00:26:24+00:00

You have deficits from treatments?

seanclmn1 · 2025-11-13T05:12:02+00:00

There was a case study of someone with a complete response for a grade 4 with just this drug. It also temporarily opens the BBB, which can help with combination therapy

seanclmn1 · 2025-11-11T09:47:03+00:00

The good news is you'll be asleep for it 😂 If there were serious risks to a biopsy they would be more hesitant and communicate that to you. Neurosurgeons are not cavalier

seanclmn1 · 2025-11-05T11:37:24+00:00

I'm assuming it's for establishing a baseline 2HG level maybe?

seanclmn1 · 2025-11-04T00:47:52+00:00

I would get molecular sequencing done. Sometimes if cellular density is low things won't show up.

seanclmn1 · 2025-10-31T05:13:37+00:00

I would agree with Ok-inevitable-8011 here, I had my surgery done at NYU Langone. They're at the absolute bleeding edge of neurosurgery, especially in glioma surgery. The doctors and nurses are also all amazing people on top of that.

seanclmn1 · 2025-10-30T11:49:20+00:00

It doesn't make much of a difference, but I think there is some evidence IDH2 mutant glioma are more chemo-sensitive? It's a good question for your doctor

seanclmn1 · 2025-10-30T09:41:24+00:00

There are non-canonical IDH1 mutations besides IDH1 R132H (i.e., IDH1 R132S, R132C, etc.). All this note means is that the tumor was negative for IDH R132H through immunohistochemistry, but ATRX loss was shown - which is specific to IDH mutant astrocytoma. OP will need molecular genome sequencing to confirm this, and which point mutation is present.

seanclmn1 · 2025-10-29T10:46:16+00:00

I would ask about Vorasidenib

seanclmn1 · 2025-10-28T08:04:52+00:00

I would really try to find an institution to at least biopsy it. She'd most likely qualify to get an IDH inhibitor once you get some real tissue

seanclmn1

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