This is how I feel about my mid-90's chemo. It totally kicked my ass, but between it and a 9.5 hour surgery I no longer have a brain tumor. Worth every minute of hell to still be here.
Man, I needed this today. Last night in the ER I was diagnosed with a rare neurological condition in which I have too much fluid in my skull and it’s pressing against my brain and optic nerves.
The meds they’re putting me on are known to have brutal side events and I’m grieving tonight being able to eat and taste things normally. But, if I don’t treat this, my optic nerves could literally die and make me go blind.
So yes - I believe it will be every minute of hell to see my loved ones’ faces every day ❤️
Hey! I just want to say that IIH is not a rare neurological condition. It’s much more common than you’d think and likely quite underreported. It’s really easy to treat with acetazolamide (fun fact: same medication used to manage altitude sickness) and most people respond to that medication really well. The only side effect I had was fizzy drinks tasted weird/kind of flat. Otherwise, just scans every 6-12 months and ophthalmologist review. It’s honestly a very easy condition to live with, I promise!
Aww thanks for the reassurance! Everyone at the ER kinda spooked me a bit (especially the opthamologist… I just left a comment about my experience including him somewhere on the IIH sub lol) but this is very reassuring.
God that’s awful. They should not have done that. I’m also a healthcare provider and worked in ophthalmology at the time I was diagnosed (lol) which was crazy, and all my colleagues were absolutely not phased by this and neither was I. I had every single test done recommended, including CT and lumbar puncture, USS of eyeball to check for tumour, but in the end I just took the acetazolamide, tapered down after a few months, stayed on it for a few years, totally fine. You will be fine too. I don’t know why the google searches always say it’s rare, I’ve seen it many times and continue to see it. My vision was never affected and the most annoying thing was taking a tablet every day haha.
My very young nephew is currently in hospital undergoing tests because of this - second attempt at a lumbar puncture today. Thank you so much for sharing your experience, this is a scary time and I appreciate the reassurance that hopefully he will be ok
So scary when it’s a young child isn’t it! I’m sorry you’re going through that! Your nephew will be fine I’m sure. The medication is great as long as he’s prescribed the same as what I had, it’s actually an incredibly boring condition lol. Just follow up eye test and scans and taking medication each day. I hope he does have IIH because it’s so benign it’s such a good diagnosis to have!
Hey stranger! My tumor was pressing against my optic nerve. I was extremely lucky because mine was foind early, before I started to lose vision. You've got this!
Yep, me too! It all started when my optometrist noticed a swollen optic nerve when I was just trying to get more contacts. She compared it to my last scans and sent me to the ER when I said it accompanied horrible migraines, whoosing in my ears, and fuzzy vision when I sit and stand. I’ve been ignoring all that for months because I just assumed I don’t drink enough water and I’m reaping what I sow… except on the days I DID drink enough water and saw no difference.
Fortunately they confirmed in the ER my visual field is totally normal, so hopefully it’s only up from here :)
IIH by chance? I also have it. If you have any questions, feel free to DM me. It’s a scary thing to jump into but it’s always good to have some support from someone who understands!
I've only seen it twice from when I did 11.5 years of working at an Opticians doing the Eye Scans and Photographs. The Optometrists would have a busy day when those two occurred and I had more supplementary tests to do for the patient.
But the fact those can be caught by FUNDUS photographs and OCT Scans really drums home how important routine eye tests are.
Some hopefully good news: Our treatment of cancer via chemo and other medication since the 90s has gotten INSANELY good. Much better side effects, comparitively. It will still probably suck and be hard, but hopefully less hard than someone even 20 years ago.
Damn. My mom has secondary brain lesions and she had an epileptic episode. She’s been having medications and WBRT. Now she’s on chemo and the worst thing she said to me is that she has no taste and no sensations in her mouth.
They did a spinal tap to diagnose the pressure of my CSF. The problem is spinal taps will only relieve so much pressure before the fluid builds up again. The meds will slow down the production of CSF in the short term, and in the long term I am to lose 10% of my body weight. If no improvements after both, we will reassess.
I can’t even imagine what 9.5 hours of surgery and chemo must’ve put you through. That kind of hell is hard to wrap my head around, but I completely understand the “worth every minute” part. I’d take the scars and the rough days too if it meant getting more time here. Really glad you’re still here.
I’m about to get on chemo for breast cancer and it is scary as fuck seeing all these side effects and the utter sickness I’ll be dealing with. Nice to see there is a light, and life, at the end of the tunnel.
Hey, I went through six rounds of chemotherapy for my breast cancer and it was a breeze. I got tired. I had a few side effects but honestly, I never threw up once and it was pretty easy. There are tons of us out there. We just don’t post about it. Take every single drug that they tell you to take and direct message me if you need any help.
I just finished 13 months of chemo (6 different types total) for breast cancer and managed to work through 11 of them. I hope your treatment goes smoothly and you have minimal side effects and no complications!!
Thank you! I’m hoping to work through a lot of mine as well, but I as this was in general a big ole wrench in my life plans, I’m trying to temper my expectations and allow myself to go on leave if I have to. Fortunate to have a job that does have those options if I need. Thank you for sharing a snippet of your journey! Did you know you were going to go through 13 months off the bat or did that timeframe evolve?
Wanted to edit because while I said it out loud, I feel you deserve a big BRAVO(A) for kicking cancer’s ass. Fuck cancer.
It evolved. Mine was triple negative so the Keynote 522 protocol was recommended or I could enroll in the ISPY study and potentially start with an experimental chemo/immunotherapy combo if I was randomized into that rather than just Keynote 522. Being in the study also meant I got more MRIs to monitor response to treatment.
I got into the experimental regimen and it shrunk my tumor a lot but not totally s I went on to Keynote 522. It shrunk some more on TC chemo then started growing again so I had to do AC chemo. I opted for dose dense AC so I had infusions every two weeks instead of three, that's when I was off from work. Tumor shrunk initially then started growing again. After AC I was off chemo for two months for my mastectomy then started six months of Xeloda oral chemo since there was still active cancer at the time of surgery .
My nurse navigator told me to try not to worry about problems that may never exist. You may tolerate the chemo very well. Medical science has come a long way, and even the more horrific treatments have pretty effective palliative care. Do I ever want to go through chemo again? Hell no! Would I do it again if I had cancer again? Absolutely.
I am 10 years disease free after chemo, surgery and radiation for Stage 3 Triple Negative Breast cancer. Fatigue and fear are the worst of it. Yes, chemo sucks, but you learn to deal with the cycle of good days and bad. Eat well, rest and take good care of yourself! 🤞🏻
Chemo is a very scary concept to me: Let's repeatedly inject you with a substance that's poisonous to both you and the cancer cells, but a bit worse for the cancer. We'll try to get the amount just right to kill the cancer without harming you too much.
I am just finishing active treatment for breast cancer, every bit of it is worth it. Biggest advice is if something feels wrong, say something. My team did amazing at treating my symptoms, you should not have to feel like you have to suffer through anything. I will also say be kind to yourself, and abuse the cancer card as much as possible. If you are not cold capping, your hair cut should be free (cut your hair if the chemo you are on has hair loss as a side effect, losing long hair in clumps hurts physically and mentally). Cancer treatment sucks, I am not going to lie, but it is doable and life on the other side of it is amazing. I wish you the best pink sister!
Take it easy on yourself and don't feel like you need to be doing anything but that. Also, when my mom was going through chemo we had to get a plumber at some point bc it killed all the good stuff in the septic system (or something like that) and caused issues, so iust be aware that can happen. Good luck with everything<3
Depending on which side effects you experience acupuncture could help, I know several ppl that went through chemo and got acupuncture to help with nausea and pain.. also weed.. helps give you appetite as even without nausea some ppl have no appetite but your body needs food to get through the chemo.
Wishing you all the best and that in a few months this is hopefully all behind you.
Currently going through Chemo and after every round I think "How am I going to survive another one??" Somehow my body does but it definitely doesn't get easier. I look forward to the part where I have more behind me than ahead, but right now I still have 4 more months to go. 😭😭
Everything tested fine infusion day, I didn't have an infection until the day after my infusion. And by the next infusion everything tested fine as well luckily.
I’m going through this now at 33 because of colon cancer. I get a pretty rare (but known) side effect when I get the chemo dose. Slurred speech, blurry vision, loss of fine motor skills and feeling like absolute shit. It passes within about 12 hours and then I “just” get the normal side effects like loss of appetite, being super tired etc. It’s kicking my ass but on Monday I have a CT scan to see if it’s kicking cancer’s ass too. Hopefully that is the case!
When I was undergoing intravenous chemotherapy for Hodgkin disease, by entire skeleton felt like it was made out of lead, woth weights hanging on my ribs and hurting every time I took a step.
And yeah, vomiting every 45 minutes wasn‘t so great either…
My mam had chemo in the early 2000s and it made her very poorly. She had it again in 2019 and this ‘formulation’ was miles better than its predecessor. It’s a horrible drug but necessary. Really glad you pulled through. ❤️
This is me right now, currently laying in bed feeling so nauseous I cannot move from the chemo. The medications they’re giving me to combat this aren’t working. On the bright side, I’ve only got one more infusion left to go. I’m so readyyy.
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u/ZephyrGale143 11h ago
Lifesaving chemo. It kicked my ass but also cancer's ass.