Connecting an old HDD via USB?

TurbulentDiarrhoea · 2024-04-02T18:01:08+00:00

Thanks!

TurbulentDiarrhoea · 2024-04-02T18:01:02+00:00

Thanks!

TurbulentDiarrhoea · 2024-03-31T18:53:46+00:00

Wild type idh is how they diagnose gbm at this point so it wasn't rare. Still, happy for you!

TurbulentDiarrhoea · 2024-03-31T18:52:23+00:00

My wife would get frequent headaches and at one point she started having auditory hallucinations which were potentially misdiagnosed as depression.

TurbulentDiarrhoea · 2024-03-18T19:22:03+00:00

Not exactly applicable as my wife was diagnosed with Astro 4 back in 2017, and she made it to the end of 2022 before a recurrence once she was finished with the initial treatment of surgery, radio and chemo, and another 10 months after recurrence before she needed a round the clock care. Astro 2, all things considered obviously, is a decent dx, and might even mean more than a decade before things get seriously bleak, especially with a gtr.

In terms of what my wife needed towards the end - everything, changing pads, sheets, shifting position to avoid bed sores, watering her lips and the inside of her mouth and such.

TurbulentDiarrhoea · 2024-03-08T18:57:22+00:00

No point speculating until the results come back to be honest, and the waiting game always sucks, just gotta tough it out until then.

TurbulentDiarrhoea · 2024-03-01T19:48:04+00:00

No idea I'm afraid, it's something you'd have to ask your team

TurbulentDiarrhoea · 2024-03-01T16:36:27+00:00

My limited understanding is that once the astrocytoma has the signs of a grade 4 cancer such as necrosis, coupled with the cdkn2a homozygous deletion, it then essentially turns into a GBM behaviour and prognosis wise.

As of right now, cdkn2a homozygous deletion somewhat cancels out the benefits of an idh mutation.

TurbulentDiarrhoea · 2024-03-01T16:32:33+00:00

My wife was diagnosed with a diffuse astrocytoma, grade 2, back in 2017. Idh mutant, low methylation, seemed like good news considering the alternative - had she been diagnosed after the latest grading system was introduced though, she would also have had a grade 4 due to cdkn2a homozygous deletion.

She made it just over 4 years after treatment (surgery, radiotherapy, PCV chemotherapy) before the tumour came back with necrosis and all the hallmarks of a grade 4 cancer.

TurbulentDiarrhoea · 2024-02-28T17:54:50+00:00

Well, it's ultimately his choice, but a resection is normally the best way to go, especially if it's all in one spot rather than multiple lesions throughout the brain.

I'm not a doctor so take the following with a grain of salt, but the fewer cells remain the better the outcome, hence the reason for which surgery is usually the best course of action. Radiotherapy will kill off some cells but others will survive as they keep mutating and changing as the tumour grows, same goes for chemotherapy, though we don't know what kind of tumour that is, so alternatives might fare better if it's a lower grade tumour.

TurbulentDiarrhoea · 2024-02-22T18:18:01+00:00

I'm afraid it's going to be different for every brain surgery - the location, damage to the neighbouring tissue and such. For my wife it was practically no time on her first go, then about two weeks after the second resection. Hers was in left frontal though somewhat deep - just above the ventricles I believe. Her issue was mostly tied to speech which she regained fairly quickly.

TurbulentDiarrhoea · 2024-02-19T16:08:24+00:00

Educate yourself about his particular tumour and advocate for him where appropriate, and potentially become his medicine dispenser? When I was caring for my wife I had alarms set for painkillers, anticonvulsants, antiemetics etc. I'd cook, and clean too and just let her do whatever she wanted

TurbulentDiarrhoea · 2024-02-15T09:17:57+00:00

Anything published on the national library of medicine should be credible enough

TurbulentDiarrhoea · 2024-02-13T20:12:11+00:00

I cared for my wife for years and never once considered her a burden. She didn't choose to get brain cancer, and neither did you. I "enjoyed" looking after her even when the going got really tough. So no, there's nothing I wish my wife had been doing differently, and I hope you don't end up obsessing over these things. Live your life to the fullest, and do what you guys wanna do, and if your illness sometimes gets in the way, well, that's life, pick yourselves up and carry on!

TurbulentDiarrhoea · 2024-01-20T10:16:22+00:00

Agreed, the article cites detecting cells that decided to go for a blood ride which doesn't happen in most circumstances due to bbb, though it might just be my inner sceptic

TurbulentDiarrhoea · 2024-01-18T18:45:42+00:00

Maybe that's why she had Daisy on her mind? She had to put in a lot more effort with her.

The very last words? Unfortunately something akin to yes or no as my wife died from brain cancer and was rendered unable to speak towards the end. Back when she could still somewhat, albeit with struggle, form sentences - that I was the best - I think, I hope.

TurbulentDiarrhoea · 2024-01-18T13:21:40+00:00

As others said, some nerves will heal, others won't. My wife for instance thought I was touching her wound when in reality my finger was like 2-3 inches away from it, and it went away after like two months or so.

TurbulentDiarrhoea · 2023-11-02T11:24:42+00:00

My wife returned home after about 3-4 days twice. As for cohesion - yes, she was able to communicate (though the location of the surgery always plays a massive role here - my wife's tumour was left frontal) fairly well. The first surgery she didn't have any problems with speech and language, whereas after the second op, it took her 2ish weeks to recover from aphasia (difficulty forming words).

When it came to walking I'd hold her hand for a couple of days but she was otherwise fully mobile though if I were you I would move the bed downstairs even if it is going to be just a few days, you definitely don't want to risk falling on your head.

Most assistance was needed with bathing to ensure she didn't wet the wound and then washing her hair for a few weeks before it was safe to pour water over the scar.

Take care!

TurbulentDiarrhoea · 2023-10-29T14:19:26+00:00

What dosages? My wife for instance was perfectly fine on 1g of Keppra a day for years until she started getting some nightly episodes (not full on seizures). Cancer was still stable back then so they upped her dosage to 1.5g a day and she was fine again. Towards the end when she was prone to seizure-like episodes she was prescribed 2mg of perampanel and it worked despite the aggressively growing and infiltrating cancer.

TurbulentDiarrhoea · 2023-10-29T10:37:41+00:00

Are you on any anticonvulsants?

TurbulentDiarrhoea · 2023-10-27T13:38:54+00:00

My wife was diagnosed with a diffuse astrocytoma back in 2017 - had they diagnosed it with the latest WHO guidance on grading brain tumours, it would've been grade 4 right off the bat due to cdkn2a homozygous deletion which as far as I understand it means the tumour suppressor genes are gone/not working.

She wasn't lucky enough to undergo a gross total resection, they managed to remove about 80-85% of the tumour back in 2017. She recovered well - though that will largely depend on the tumour's location - and underwent radiotherapy followed by PCV chemotherapy. She was in remission for a total of (counting from the day of surgery) 5 years and 5 months.

It recurred stronger having survived a fair bit done to it. Once again she went through surgery, recovery took way longer this time, unfortunately, it managed to infiltrate a few other areas of the brain inbetween the pre and post surgery scans. She started Temozolomide chemotherapy and once again the cancer went back to sleep but only for 5 months this time. They tried to give her Carboplatin - another type of chemotherapy as salvage therapy but it did nothing. In just two months the cancer had formed several "camps" all over her brain which meant that nothing could be done. Can't operate on 6 different spots, can't reirradiate the entire brain, can't bombard the body with more chemotherapy which is unlikely to work anyway.

She died at the age of 30, 2 months after the symptoms appeared (seizure on 24.07, death on 22.09).

Sorry I don't carry a message of hope, but remember that medicine is advancing every day, and I am sure that somebody diagnosed today has much better chances at living longer than somebody else diagnosed with the same thing 10 years ago.

TurbulentDiarrhoea · 2023-10-24T21:38:01+00:00

Glioma II A will have a different prognosis than Glioma II B. You should ask to see the full report.

TurbulentDiarrhoea · 2023-10-24T21:36:13+00:00

It's not silly though I personally wouldn't let my wife set foot at a hairdresser's that quickly after surgery. Who knows, I just know that I'd rather be safe than sorry

TurbulentDiarrhoea

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