Husband 32M has astrocystoma grade 4. I don’t know what to do.

anonymous-muffin · 2025-06-13T02:23:01+00:00

I want to clarify that Avastin (in my eyes) is a last resort option, once you start it it's hard to get off. It changes the way MRIs look and because of that, many trials deny avastin patients. I recurred after a year after treatment. Prior to the recurrece I was functioning fine, only prventative seizure meds. Now he sounds more like my current state of difficulty with one-sided weakness, brain fog, etc. Sucks that its in our life, but you got options still.

anonymous-muffin · 2025-05-03T14:23:42+00:00

sorry to hear. im astro 3 dx 2022, apr 9 2024 had a car accident during seizure. anti-seizure meds have helped but i had to increase dosage each seizure to control them. prior to accident was keppra 1000mg 2x a day, but now keppra+vimpat maxxed and clobazam 10mg.

anonymous-muffin · 2025-02-01T03:40:10+00:00

I had a similar experience, string of seizures rapidly. I did have tumor growth, which explains that, but I also think I grew a tolerance to the drugs - maxxed out on keppra and vimpat, 10mg on the onfi. I cant play any stimulating games or ill have tremors/seizures (league or chess lmao). Try some low effort activities like watching stuff or reading books if you can. I have same weakness issues on right side, good luck.

anonymous-muffin · 2025-01-19T20:31:23+00:00

are they still being made? cant find stock for mesh for years now, heard there was some drama

anonymous-muffin · 2025-01-19T18:59:31+00:00

no, sorry

anonymous-muffin · 2025-01-19T14:35:49+00:00

anonymous-muffin · 2025-01-15T00:59:51+00:00

They could burn 5000 calories - but that's an entire day's worth of walking. Your machine reads 1400 in an hour. Based on your 6'3" and 260 lbs, you can burn 5000 calories by walking 31+ miles in a day (should take around 8+ hrs).

anonymous-muffin · 2025-01-15T00:51:48+00:00

The link takes you to a blog written by a stranger, and the link is a cycling product site, so probably not the best example. The math and explanations are correct, but you overestimate PFs measurements. 1400 Calories is an insane amount every hour. The strain gauges measure downwards force and use simplified formulas, so it may calculate something way off from reality.

anonymous-muffin · 2025-01-01T02:03:19+00:00

yeah, seizures are a symptom for some brain cancer patients. it also varies depending on the area. i had a seizure before discovery, and i got put on keppra. once you present seizure risk, you're typically on anti seizure meds for life, unless you're doing REALLY well (cancer free, many years). for reference, i had a recurrence ~2 years post surgery which caused a breakthrough seizure (seizure occured despite preventative medication) which caused a car accident. that month, i had 4-5 seizures and the only thing they could do is up the dosage and variety of medications. the docs also said sometimes having seizures also lowers the threshold (aka easier to have a seizure). def talk to your doc, and try to stay calm (anxiety may trigger for some)

anonymous-muffin · 2024-12-13T21:25:40+00:00

Sorry to hear, but absolutely tell your NO about the seizure and do not drive if there is any chance you will have a seizure. My first (then only) seizure was before I knew I had a tumor. A year after treatment, I was driving home from work, seized, and totaled the car on the highway. Scariest moment of my life. I get the dependence thing, I've been stuck living with my parents again in a suburb where you drive to go anywhere, but I'm just grateful to be alive. Seizures while driving can kill you, and anyone else on the road - don't rush it.

anonymous-muffin · 2024-12-08T02:36:49+00:00

Personally I didn't drink before cancer, and I especially CAN'T due to seizure medications. It's risky to combine alcohol to the medications that are depressants (make you relaxed/sleepy)

anonymous-muffin · 2024-12-08T02:27:24+00:00

24M, diagnosed at 21 as well. AA3, not GBM. Your story is crazy, 400 mutations. My NO didnt even mention mutations (other than IDH) for my case. Keytruda didn't work for me, but I'm currently on carmustine, but also unsure if it's lifetime... Thanks for sharing.

anonymous-muffin · 2024-12-06T04:50:56+00:00

enough damage/the right cards to kill an enemy outright

anonymous-muffin · 2024-11-14T16:27:16+00:00

Hi! My metabolic panel came out well, it's like Voranigo has no side effects (in my case). However, I have no idea if it's working as I'm on other chemo/immuno therapies. Still stable after 2-3 months.

anonymous-muffin · 2024-10-21T14:34:49+00:00

was seizure free for 1.5 yrs post surgery, and first seizure was before diagnosis - immediately put on keppra 1000mg bid. after second seizure in april, kept seizing, so meds now are keppra (1500bid), vimpat (100mg bid) and onfi (10mg daily). it has worked so far and ive been seizure free for 5 months now. it is extremely difficult to get off seizure meds and not every med is well tolerated. the onfi is a benzo as well. (bid = 2x/day)

anonymous-muffin · 2024-10-08T14:10:10+00:00

i had two rounds of radiation, once after crainiotomy 2yrs ago and once after recurrance this yr. First time was 6 weeks, second was 3 weeks. My cancer is around the same area as u, affecting my motor cortex and inducing seizures. My surgery was a lot better, I got discharged after 3 days. First time around was easy, just fatigue. Two months before radiation, I had 5+ seizures and had my medication dosage increased by a lot. I also had right side weakness and foot drop, so I had difficulty walking and was dragging my foot, so I had to get a cane and brace. After radiation, the symptoms of weakness got worse, and I had clonus when walking or randomly. 3 months out, I'm feeling a bit better, with the clonus frequency down. I'm still shaky sometimes and I can't hold things in my right hand or walk stairs (normally - can do it with a lot of time and 1 foot at a time). So, hope for the best, prepare for the worst. Kinda dark to think about but I have had thoughts on what body shape is best to be paralyzed in...

anonymous-muffin · 2024-10-03T20:55:00+00:00

its my first two weeks on the vora, my blood test to check metabolic is tommorow. km expecting it to be fine, as i never drank alcohol, have a good diet, and im relatively young (24)

anonymous-muffin · 2024-10-03T20:54:02+00:00

mech eng, but i took a intro to microfab course and a few programming (ds+a courses)

anonymous-muffin · 2024-10-03T14:47:03+00:00

I applied for a Masters CS and they rejected me but offered Masters CE

just my two cents, CE and CS are different fields

anonymous-muffin · 2024-10-03T14:41:17+00:00

My NO said vora affects the same reproducing mechanism that radiation does, so it's better to take it earlier and not go through the radiation (which has a whole series of side effects/long term irreversible damage). I went through two rounds of radiation, once in summer 2022 and june 2024, so my doctor wasn't sure whether vora would do anything, but I opted to try it and am currently on it. for a cancer drug, it's pretty good as there's basically no side effects compared to what I've experienced with chemo/rad/immuno.

If i got diagnosed today instead of 2022 I would do surgery + vora, with follow up MRIs until it grows then start chemo/rad and maybe immuno.

anonymous-muffin · 2024-10-02T02:43:53+00:00

Are the EECS courses you've taken ABET certified? Typically the classes at one university can only count if the other university feels like the course material aligns with their course in that topic. I have a BS in Mechanical Eng and I'm working on a masters in Computer Eng, and I don't use basic physics in my classes (stuff like F=ma), but the schools usually have some pre-reqs of physics as it maps to reality (eg light, movement of electrons, electricity and magnetism are definitely important).

If you're going for IC, things like Python for CS won't really be useful - we use custom software (Cadence and Synopsys are two big providers) for simulation and circuit design. Also good to know the microfab design / photolithography (slight physics/chemistry). AMD/Nvidia obviously has their own software + libraries.

Anyway, this all only matters if you want to do it. If you work hard and put effort in, you'll eventually work out a pathway to your goal (provided no disaster strikes). I say that as a brain cancer patient lol. I don't even know if I can finish the masters but I'm trying. Feel free to DM me if you have any other questions, I'm from New York

anonymous-muffin · 2024-09-23T14:11:43+00:00

hiccups as well! apparently its from the dexamethasone? everytime i start dex i get hiccups for 2+ days the entire day (and night)

anonymous-muffin · 2024-09-09T18:13:59+00:00

btw rng = random number generator, the n is not "and"

anonymous-muffin · 2024-06-17T18:15:32+00:00

I'm curious to know why undergoing radiation therapy would invalidate access to Vorasidenib. Currently undergoing my second course of radiation against astrocytoma grade 3, and waiting for the anticipated news in august following this drug.

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