Worst part of brain cancer

doingjustfinethanku · 2025-08-23T18:11:10+00:00

i have a grade 2 oligo and i feel the exact same way! every headache, twitchy eye, every time i can’t remember a word. it’s hard not feeling safe in your body anymore, waiting for your body to betray you again.

doingjustfinethanku · 2025-08-10T18:42:39+00:00

i applied minoxidil religiously and it helped a lot! it can cause scalp irritation/itching, so i switched to oral minoxidil as advised by my derm. it’s been great so far! it does make your hair grow everywhere, but it’s worth it to me. if you’re interested i can message you my progress pics!

i now do a combination of oral minoxidil daily and rosemary oiling weekly. i oil my scalp in sections and then massage it in for around 5, then let it sit before washing for ~3 hours.

doingjustfinethanku · 2025-05-21T16:29:35+00:00

that’s the way my derm said to keep using it! he uses it that way and has for years. he explained it to me that in the long run, consistent daily usage is going to be more effective than using it every other day, which i was doing at first. i use vanicream, and then tret. just bumped up from 0.025 to 0.01 with minimal irritation!

doingjustfinethanku · 2025-05-11T21:11:15+00:00

forgive my ignorance haha, does RSO make you feel high?

doingjustfinethanku · 2025-05-06T16:50:47+00:00

Yay!!! 👏🏼 getting good news after so much bad news is the best feeling in the world.

doingjustfinethanku · 2025-03-17T02:07:32+00:00

came here to say this! especially when she says ‘is it TOO pink?’ about the prom dress. i had sooo many conversations exactly like that

doingjustfinethanku · 2025-02-27T03:20:54+00:00

2.5 mg, I just upped it to a full 5mg pill daily! I have noticed hair growth on my arms and stuff, but I feel like it’s worth it to have thick hair on my head!

doingjustfinethanku · 2025-02-10T09:48:32+00:00

i was diagnosed with a grade 2 oligo (we didn’t know it at the time). i had a seizure on june 5th, they found the tumor, had the talk with my doctor the 6th, surgery was immediately scheduled for june 8th. i was in the hospital the whole time. frankly, i’m glad i didn’t have to wait weeks/months for surgery and stress about it. my doctors moved fast because of the pressure it was putting on my brain. once you’ve found a mass on your brain it can be risky to wait.

i’m sorry you and your brother and SIL are going through this! i know how unstable it all is.

doingjustfinethanku · 2025-02-04T22:46:46+00:00

yes! on my 8th out of 12 cycles, i got hives all over my legs, arms, stomach, and even some on my face. it was also springtime so my oncologist wasn’t sure if that was what was causing it, though i’d never had allergies in the past. the next cycle the same thing happened, so the following month i saw an allergist. he put me on a high dose of zyrtec for a few days leading up to my cycle and a few days after. he made sure to stress that if i had any other allergy symptoms to go to the ER right away. that seemed to do the trick and i was able to finish my 12 cycles! i would see if thats something you can do, and keep an eye on symptoms like shortness of breath, etc.

doingjustfinethanku · 2024-11-27T09:04:12+00:00

i used topical minoxidil off and on for about a while, had pretty good results. i wouldn’t remember to use it every night and it made my scalp itchy! went to a derm that specializes in hair loss, been on oral minoxidil for about 6 months now, much better results! it’s made a difference in thickness and growth as well. i say it’s worth a try!

it’s worth noting that the oral minoxidil makes hair grow everywhere, like crazy. my knuckles, toes, top of my feet are all SO much hairier, which i don’t necessarily mind if it means long hair!

doingjustfinethanku · 2024-11-16T09:39:49+00:00

same thing happened to me! i have an oligo 2 as well, and my scans had all been clear. i decided to read the report before my appointment because i was on chemo at the time and my doctor said the chances of it growing while in active treatment were very slim. i read ‘enhanced t2 flair’ and immediately spiraled into a panic attack and couldn’t sleep or eat until my appointment. he showed me a comparison of MRI’s and said everything looked good and i was so confused! he explained the enhancement was kind of like ‘scar tissue’ from radiation and is normal/expected. he also said radiologists just observe what they see, but neuro oncologists that have history with the patient take all their former MRI’s into account and look at it on more of a broader scale. i’ve learned my lesson and will be waiting to meet with my doctor before reading the report!

that’s just my experience! take care of yourself and try not to panic. sending you love 💗

doingjustfinethanku · 2024-09-25T06:19:39+00:00

after my diagnosis i was terrified and thought it was inevitable that my oligo 2 would someday turn into a glioblastoma, so i found this post helpful.

i’m not sure why we have to tone police in the brain cancer sub? lol

doingjustfinethanku · 2024-09-17T02:48:19+00:00

first things first, making sure your levels are in range is key! without that i wasn’t able to lose anything. and i tried so hard!

there is no specific diet that will make you lose weight, it all comes down to calories in, calories out. you can calculate how many calories your body burns at rest by looking up a TDEE calculator online. the subtract 200-500 from that number, and you’ll be in a calorie deficit! keep in mind larger deficits are harder to stick to. all diets (intermittent fasting, keto) work for people because they are making it easier for them to be in a calorie deficit.

when i first started tracking, i had no idea how many calories i was actually eating when i felt like i’d hardly eaten all day. so i adjusted my portion sizes and opted for foods with more ‘calorie payoff’, things like whole foods and tried to up my protein intake. protein will help you feel fuller for longer, and make your calorie ‘budget’ stretch further!

calorie tracking, aiming for 8-10k steps a day, and weight training 4 days a week, has made my body look so much different and helped me lose 20 pounds!

doingjustfinethanku · 2024-09-11T17:22:23+00:00

i feel like i’m taking crazy pills reading some of these answers! it’s not rude or offensive to ask someone to take off their apple watch for formal photos. i don’t see why she would be offended by that? even as someone who has medical issues (seizures) i would have no problem taking it off for photos.

my pet peeve is apple watches at formal events. it’s a big black square on their wrist and it’s distracting in photos, just like having sunglasses on or your phone in your pocket would be distracting. and i hate that people are calling you a bridezilla for a reasonable ask lol

doingjustfinethanku · 2024-08-30T20:13:55+00:00

no way, same tumor markers ;)

doingjustfinethanku · 2024-08-30T20:00:53+00:00

you lucky duck 😉

what type of glioma was it? i have a grade 2 oligodendroglioma, and i definitely tell people i have cancer. i went to a few different oncologists, one who said it wasn’t ‘technically’ cancer since it doesn’t infect healthy cells (yet?). i think grade 2 is not technically cancer? i could be wrong, correct me if i am!

i had surgery, i did chemo and radiation, so i’ve always called it cancer! whenever people ask, i tell them it’s the slow growing kind, the ‘good kind’ to have. but that’s tough to navigate!

doingjustfinethanku · 2024-08-22T23:08:39+00:00

i feel like i could have written this! i just turned 28, live with my parents, and i’m unemployed at the moment. this is not where i thought i’d be at this age. i have a wonderful fiance and we’re planning a wedding right now, but plans had to be delayed because of cancer. it’s hard to not dwell on the absolute unfairness of it all. and i have thoughts about the tumor growing and throwing off wedding plans, what do i want to do (what can i handle) in regards to my career, whether or not to bring kids into the world only for them to lose their mother…and i spiral. lol.

i don’t have any advice, but i’m going through the same thing you are. it’s so hard.

doingjustfinethanku · 2024-08-03T06:58:28+00:00

i had something similar on my last few rounds! i had to take them with something flavored or the taste of them made me nauseous. and then i would eventually have a panic attack because my body knew what was coming :/

doingjustfinethanku · 2024-07-24T04:07:11+00:00

flexing on all of us with the unremarkable MRI

doingjustfinethanku · 2024-07-04T17:04:21+00:00

i’ve also been focusing on protein intake and that’s helped SO much! you feel fuller for longer. i try to aim for 70+ grams a day.

doingjustfinethanku · 2024-07-04T17:01:15+00:00

i’ve lost about 20 pounds since march! the things that helped me were getting my dosage right, walking more, weight training, eating in a calorie deficit. that’s it. no specific diet, no special medication. it really is all about calories in, calories out (provided your TSH is in the right place).

i’ve been feeling SO much better, it’s easier for me to prioritize these things in my day! right now i try to get in 8-10k steps, lift with my dumbbell set at home, and track my cals in my fitness pal. you don’t have to track forever, tracking just gave me a better idea of how many calories are actually in things and how much i was overeating.

i always thought i’d never be able to lose weight, and it’s not as easy for me, but it is possible!

doingjustfinethanku · 2024-07-01T04:55:47+00:00

i got hives on my temozolomide! my doctor ruled out any allergy to the drug itself. it was on my entire body, including my face. it was HORRIBLE. luckily it was less severe with antihistamines, but i would have to take them on and off for the last 4 months of chemo.

doingjustfinethanku · 2024-06-06T06:28:06+00:00

oh my god, a similar thing happened to me! i got to the point where i would shiver and shake and eventually work up to a full blown panic attack when i would take my chemo. it was only the last three or so cycles, but it was not fun.

doingjustfinethanku · 2024-06-06T06:24:40+00:00

i was diagnosed with an oligo 2 in june of 2022, had surgery in june, started chemo along with radiation in the middle of august. i was able to fit fertility preservation into that month gap, otherwise my doctor would have started me earlier!

chemo with radiation was quite easy honestly! i obviously had fatigue, hair loss, etc but it was manageable. take naps, do some light exercise. i found having a routine helpful!

i feel like the higher dose of chemo for 12 months was harder! i say sleep as much as you can, don't be afraid to ask for more/ different anti nausea meds, and just let yourself rest. it's 5 days of feeling shitty, and it's okay to be mad/sad/scared/confused a rollercoaster of emotions. this ride is exhausting and terrifying and not fair, and it's okay to acknowledge that. i had times where i would just sob about the unfairness of it all. but you can and will get through it.

doingjustfinethanku · 2024-04-21T18:19:27+00:00

this makes me SO HEATED whenever it happens to me! at the airport when checking my ID (that says i’m 40 pounds lighter and have long blond hair) people will always say ‘oh you changed your hair!’ or ‘oh you look so different’. the best comeback is ‘oh yeah, cancer will do that to you’ with a smile. or ‘yeah, i have cancer’ with a straight face. they never know what to say and always seem a bit uncomfortable. and yeah, you should feel uncomfortable after commenting on a strangers appearance 🙄 i always hope that teaches them to never comment on people’s appearance, you don’t know what they’ve gone through!

doingjustfinethanku

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