r/braincancer

I had no idea that it was this medicine. I was on 1000 mg a day for over a year since having surgery. I was not even told about this as a possible side effect. But. My family was quick to tell me how mean I had become. Then I noticed it as well. I just assumed it was something related to my brain going through the traumatic experience of surgery and radiation. I finally met with a neurologist who was quick to change me to lacosimide. After a very lengthy process of switching off keppra, I’ve noticed that my calm demeanor is returning.

Felt like I should share this with the sub, in case anyone else was weirdly angrier than they used to be.. I’m not sure if it is a known side effect or not, it wasn’t to me.

Sunday the 27th I had my first seizure, went to the ER thinking it was a one off or something and they found a 4cm mass on the right side. They're saying they think it's an astrocytoma. I'm probably missing things because im still in shock, I just had a baby 7 months ago. I know they're scheduling me for surgery asap, and that I'm going to be awake for it. Ive been having issues with my memory lately and clumsyness but I thought it was because being on lamotrigine, which I'm on for a mood disorder. Idk what I'm looking for here, words or wisdom, support. Thank you for reading my ramblings

I'm a 12-year brain cancer survivor (started grade 2 now features of grade 3 diffuse idh1 astrocytoma in right temporal occipital region). It's strange seeing that number. I've oriented my life for the last 12 years under the assumption I'd be dead by now. But here I am… chugging along. Three brain surgeries later, still navigating life, meaning, and purpose in the face of a seemingly fatal ending.

Some context. My entire childhood I wanted to be an entrepreneur. When I got my diagnosis, all the gloves came off. There was no longer the fear of death, and everything looked easier compared to what was coming. I started a company shortly after my second brain surgery. One employee became two, two became ten, and ten became 100+. It took 8 years, and we did it the right way, putting our employees' welfare first.

Two years ago I stepped out to start something new: helping families coordinate healthcare for their aging parents. I'm in my 30s, I've had three unrelated types of cancer, and I have several chronic conditions caused by the surgeries. It's been a long and sometimes lonely road, so helping people navigate the complexity of healthcare felt right.

Then last February it was routine scan time. Big recurrence. Yikes. Surgery that May.

This one hit me harder. More deficits. More cognitive impacts. I'm very much still me, but it took a while for my brain to heal, and much longer to work through the fear of starting another business. What happens if I have another recurrence and need surgery, chemo, radiation? What happens to the people counting on me? I once responded to this exact situation with determination and action. This time I responded with fear and paralysis.

So I hired a sports psychologist and worked through my blockers. I realized that if I'm not creating and doing what I do best, I've already killed the passion and magic within me while I'm still alive. So I'm continuing on, albeit in a very different manner than the first time.

I thought working through the emotional blockers was all I needed, and that I'd be off to the races. Oh how I was wrong. With any intensive cognitive work I last 2–3 hours, then I'm absolutely exhausted, physically and mentally. I'm still working on my stamina. I know it will come back and that I need to be patient.

All of this got me wondering how many of you, especially those diagnosed in your 20s and 30s, relate to it as a death sentence the way I did.

I'm thinking about making a video series about all of it: the ups and downs, and what it's like to build a life and a business with a brain that's been operated on three times. I want someone who's like I was in my 20s to see that life isn't over.

So I'm curious:

•	Did you treat your diagnosis as a death sentence? How did that shape the choices you made?
•	When you were newly diagnosed, what did you wish you could have heard from someone further down the road?
•	If I make this, what questions would you want answered? Nothing is off limits: the surgeries, the deficits, the fatigue, the fear. I'll build the series around what you ask. Caregivers too.

Maybe I'm looking for a nudge. Or maybe a big push, like the one my sports psychologist gave me last month. Either way, thanks for reading.

My father (50) has recurrent Grade 3 oligo. He had surgeries in 2017 and 2022, followed by radiation and chemotherapy.
His latest MRI shows that the tumor is growing, and his right hand and leg have become much weaker over the last 2 months.
The medicine oncologist has suggested a possible third surgery with a neurosurgeon.
I am worried about third surgery because he is already weak and has had two surgeries and radiation twice.

Has anyone here gone through a third surgery? How was the recovery, and did it affect your strength, walking, or daily life?

I’m worried that even after going through all of this, the tumor could still come back early as it already Grade 3. After everything i have been through, I feel completely lost and don’t know what to do next

I am seeking some advice and looking for suggestions to help an older relative, 70-something Female.

She had a mass removed from her brain over a year ago, the details of which I am not 100% informed. Prior to surgery, this mass was affecting her speech, the fine motor movements of her hands, and her balance.

Surgery was a one-time operation, it was successful in removing the mass, but as her doctor suspected, a lot of her symptoms did not resolve and would not be expected to improve with time. 

Post surgery, she still has a lot of slurring and difficulty annunciating and pronouncing words. Sometimes when she is tired or stressed, she has difficulty speaking and getting the words from her brain to come out of her mouth (in non-medical terms). Most recently, she has had worsening upper body 'contractions' as she calls them, where her muscles spasm and interrupt her speech and movements for a second or two. She is getting an MRI and further testing to see what this is about - results TBD. 

She has lived alone for many years but has one very supportive and loving friend.  Family members, including myself, are 45 min away and we see her occasionally and on holidays, and meet up for lunch sometimes, etc.

She is still independent but some loss of peripheral vision is threatening her ability to keep her driver's license. I am not sure if this is related to her brain mass or not, but no matter. It is still a looming threat that she is very stressed about.

I am not seeking medical advice - I am looking for ways to support her independence, help her morale and her mental health, and ways to keep her busy throughout her day that won't be too taxing on her energy levels since stress and tiredness tend to cause her symptoms to worsen.

I am grateful for any insight as to how I can help her and support her. She would kill me if she knew I was asking the internet for help, but I love her and I want to be there for her and I don't know what else I can do. Any insight, advice, and suggestions are appreciated. Thank you!

My mom died 10/1 at 3am after deciding to go on hospice. She did radiation, tried chemo time after time but couldn’t tolerate anything. Frustrating because new symptoms were appearing, but her team claimed they didn’t see any new growth on scans. Then, a few months later, she experienced nausea after eating, then vomiting after eating, then constant nausea. I’m assuming cancer spread again and caused it. Doctors didn’t do anything. She died about two months after nausea symptoms started. She was 56.

Burner account. My (M50) wife (F50) had a grade 4 glioma (not a GBM) which was discovered after an MRI. She had surgery, where most of it was removed. She's now undergoing chemoradiation therapy for the next six weeks. She's doing good. The team at the hospital are amazing, and our friends have rallied.

We've been together for nearly 30 years and she is my world. We've always done everything together all our lives, and we are facing this together. However we are now in a pressure cooker environment and sometimes what I do doesn't land right and causes her stress.

I'm managing home and work and I feel I'm stretched pretty thin, but I'm doing ok. I'm getting help myself - counselling, support group sessions, mindfulness, reading materials etc. My friends are also helping and checking in a lot. So I'm not alone.

Sometimes, things go wrong. There's times where I am overly cautious about what I say and do. Sometimes I nearly "forget" and assume she's ok when she's not. Sometimes she doesn't need me to "do" anything, but just to be there and support her emotionally.

I'm finding navigating all of this pretty hard, and things can turn on a pin and she's then really upset and it's like the worst thing in the world. I don't argue because I feel it's not right to, as I'm not the one with a brain tumour, she is. The last thing I want to do is stress her out.

Ultimately me trying to second-guess situations is making things worse, as I over-think. I always want to "solve" the problem to get back to "normal" as I get anxious in the period in between (and we usually do get past them, but every time feels like we won't).

I need to find ways to accept that a) these things will happen and b) not to try and rush smoothing things out. I get hurt when she points out the flaws and wrong things I've done or thing I'm not doing, feeling the good things I am doing are being overlooked.

So. Can I ask for any partners reading who've been in a similar position to post any advice, tips, experiences, help etc. How did you navigate all of this? Thanks.