Are my seizures related to chemo? Who can help with this?

Hi,

It seems your cancer is under control, with main worry now being whether past medication/treatments for cancer are now causing the currently experiencing seizures.

Best is to make a list of treatments/medications you used to take, from when-when and show all scans results you used to take to your neurologist if he/she is unable to access your records. It will save you lots of time redoing scans which you may no longer need to do.

Be as detailed as you can. Especially when it comes to duration/time of any treatment and prepare your answers in advance when being asked symptoms. And again, when does one start/frequency will be helpful.

All the best!

Cheers,
Louis

@louissc this is first time i think after my chemos its happened (and this was the 6th one), and yes the neuro has access to the records, that was reason i got in with a neuro there... tbh its first neuro i had seen in prob 20 years, simply because the dilantin had kept everything under control and wouldn't have even considered changing it except for the fact that dilantin doesn't play nice with one of the drugs they were wanting to put me on for the cancer treatments and vimpat would. Although now its up in the air whether it will be that drug or something else as "maintenance" ...lot will depend on what the followup CT scans show next week... its more of the do i discuss the seizures with the doc or no...and which doc ...IF i do..

@mommacandy
I believe it is essential you discuss your epilepsy with a Neurologist, Oncologist, and your primary physician may be have some helpful advice. Be completely open and honest. Tell them everything from the first seizure to the last.
I don't know much about cancer treatments being related to epilepsy other than radiation directly applied to the brain which can cause seizures soon after exposure or many years after exposure in some people.
I would have concerns about the possibility of body chemistry like low sodium, blood sugar levels, etc which may trigger seizures. Definitely talk to your doctors to try and get them controlled. There are seizures that are extremely dangerous.
1. Status Epilepticus, seizures that don't stop on their own.
2. S.U.D.E.P. Sudden Unexpected Death in Epilepsy, although these conditions aren't common they may end in death. So it's important to do as much as your comfortable in doing to control your seizure disorder.
Do you primarily have nocturnal seizures?
Take care,
Jake

@jakedduck1 like i said, i've been on meds for them for years and usually have no issues... generally i know what it feels like and for how long i suffer with after effects normally on the rare occasions i do have a breakthrough one (which almost always are either stress related or i've missed a dose of meds)... this was just a very unusual lingering after effect which is what rattled me and made me wonder if it had to do with the last chemo... when i first started having them 38 years ago they were only when i was asleep and sometimes went 2 years between them which is why original doc wasn't really concerned all those years ago.. it just kinda threw me considering this was the 6th (and final) chemo of this series (and hadn't had one through ANY of this series or my previous series in 2024).. which made me wonder if it was simply because my assorted levels were soooo low when i got this final chemo...

@mommacandy I am alarmed to see you back here with these epilepsy symptoms. As you’ve shared, you are no stranger to seizures. I find myself wondering, too, what’s going on that you developed seizure activity after your last chemo session.

You go back this week, right? Will you see the neurologist again?

not yet, i had a CT scan today... here's what it said
this is copied from CT results
Liver: Although there was pre-existing tumor on the hepatic capsule,
overall capsular hepatic tumor burden is increasing. A previously seen
capsular tumor implant which measured no greater than 2 mm craniocaudal
currently measures (0.6 cm) (series 601, image 51) there is increasing
volume tumor along the undersurface of the right hepatic lobe, (series
601, image 52). No significant focal intraparenchymal hepatic lesion
Peritoneal cavity and surface: There is irregular soft tissue in the left
hemipelvis which appears to be increasing in overall solid volume when
considered in multiple planes., See current image (series 6, image 275)
compared with prior image 6-270. Similar-appearing nodular soft tissue
seen more superiorly in the left hemipelvis on (series 6, image 256). No
omental caking. No free fluid. No free air.
IMPRESSION:
1. Very minimally increasing peritoneal tumor burden, as described above.
No new site of disease identified.
2. Remainder as above

@mommacandy

Hi,

Do update us what you experience is like come this week.

It does seem like you are also seeing a number of specialists. Are they in one singular hospital or clinic based?

Cheers,
Louis

@louissc all in one hospital and its a big teaching hospital...so far no one can agree on what it is specifically , but seems like the consensus among the doctors on the team has been levels just dropped a little too low after the chemo and nothing to be concerned about as all the bloodwork on Monday was fine and there's been no further seizure incidents..
i actually have a couple different surgeons, 3 oncologists, endocrinologist, neurologist, nutritionist, pharmacist, a couple of nurse practitioners, dermatologist, social worker, chaplain AND a care coordinator in my "care team" (prob someone else I've forgotten LOL)... so basically when i contact the care coordinator she coordinates with whichever doc is needed for whatever is going on...between the various cancers and other stuff I've been through over the years I've tended to rack up a few who are familiar with me LOL

@mommacandy

Hi,

Being in a hospital rather than a clinic is a good one. I had just been discharged from a hospital after being down with Influenza A (which probably caused those scary 3 seizures within 6 hours).

My frustration was doctors from same department couldn’t agree on whether I could be discharged. I gave up, and said “get me out of here”. No other doctor from other department was there despite my primary cause for admission was influenza.

It’s heartening to know a great coordinator is behind your back. One good thing about not sticking to 1 single specialist is there’s no “group think”unless a team from same department will be evaluating your case after consultations. And doctors from different departments work with each other to determine root causes.

If you’re comfortable with the team you’re working with right now, there’s no harm sticking with them. But if it’s been too long, do discuss openly the practicalities of obtaining a 2nd opinion. I did it with my current neurologist and he shared after almost a decade handling my case, if I were to switch, it’ll probably be overseas and I would have to start from 0. I’m already 45, and we did discuss the challenges I would face. There were only that many decades left in my life. He said the final option was mine and he wouldn’t stop me. I trusted and still trust him. If those medications don’t work? I’ll just call it life.

I do hope the doctors handling your case are great ones and things can only go up for you. Most importantly, no doctor can keep your spirit up and that’s under your control. When things don’t feel well in my body I’ll just tell myself it’s ok that’s a side effect. That’s some no med can do for you.

Cheers,
Louis

Hi @mommacandy!
First, welcome to our group here at Connect. I see Louis has already given you great support — thank you so much, @louissc!
Like Louis, I'd never heard of ovarian cancer treatment evolving into epilepsy before, but I was curious, so I did some research. It turns out this can happen, though it's relatively rare. Certain chemo drugs used in ovarian cancer can trigger PRES (Posterior Reversible Encephalopathy Syndrome) — a temporary but serious brain condition. Seizures occur in the majority of PRES cases, and in a minority of those cases, it can evolve into a lasting epilepsy diagnosis. I'm not a doctor, so please check whether this information holds up with your own medical team — here are some sources I found useful:
Extreme complications related to bevacizumab use in the treatment of ovarian cancer: https://pmc.ncbi.nlm.nih.gov/articles/PMC7812204/
Case Report: Benign reversible encephalopathy syndrome after bevacizumab therapy for metastatic ovarian cancer: https://www.eanpages.org/2013/03/01/case-report-benign-reversible-encephalopathy-syndrome-after-bevacizumab-therapy-for-metastatic-ovarian-cancer/
Epilepsy after neuroimaging normalization in a woman with tacrolimus-related PRES: https://pubmed.ncbi.nlm.nih.gov/20171145/
What really stood out to me, though, is that your seizures started well before your cancer treatment, and you were already on anti-seizure medications with good results — even though you've never received a formal epilepsy diagnosis. My interpretation is that you likely have a pre-existing, undiagnosed seizure disorder — not new-onset epilepsy from cancer — with your ovarian cancer treatment possibly increasing your seizure activity on top of that.
I relate well to the undiagnosed part myself. I lived for decades with undiagnosed epilepsy until 2019, when I was finally diagnosed at 48. I started having focal seizures as a teenager, and every EEG and MRI came back normal for years. Doctors — including neurologists my mother took me to — simply told her it was "my nature." Without a correct diagnosis or treatment, my seizures gradually worsened over the years, until an EEG with sleep deprivation the night before finally captured epileptiform activity. Undiagnosed epilepsy turns out to be far more common than people realize — I've heard similar stories from many others, including in this CURE Epilepsy podcast about a young doctor whose own epilepsy went undiagnosed for a decade, despite her medical training:
Despite Medical Training, A Young Doctor's Epilepsy Goes Undiagnosed for a Decade - Cure Epilepsy
https://www.cureepilepsy.org/seizing-life/despite-medical-training-a-young-doctors-epilepsy-goes-undiagnosed-for-a-decade/
Given my own journey, I'd really recommend seeking out a neurologist with strong experience in epilepsy, or ideally an epileptologist.
Since your last EEG was quite a while back and came back inconclusive, has anyone suggested repeating it — ideally with sleep deprivation this time? Also, do you know what your MRI from January showed, and whether it was a standard brain MRI or a more specific epilepsy-protocol MRI?
Sorry for such a long post — I hope some of this helps.
Chris