Seizure - New to Colon Talk

[3legs]

Hi everyone.
My name is Alex ( sounds like AA ) and I was diagnosed with stage 3 bowel cancer late Nov 2019 and had a 5cm tumor and approx 3rd of my ascending Colon removed in early Dec.
They found some cells in one of 23 lymph nodes removed.
CT scan shows it hasn't spread to any organs so it would appear I have dodged a bullet however I have been placed on 6 months of chemo (FOLFOX).
1st session 3 weeks ago went ok with the usual side effects, tiredness and queasyness ( and bad typing ) but passed after about 6 days after the initial infusion (then bottle for 46 hours).
The week before the next infusion (every 14 days) was really good. Then I had the second round last Wed 29th (due to the long weekend) and went better than I thought until yesterday.
Yesterday I collapsed while in my shed doing basically nothing other than standing and talking to a friend. Thank you know what I wasn't driving. He called my wife who called an ambulance and was carted off to hospital.
Now I'm 60, never had a seizure of any form in my life, hell I've never fainted. I've been in excellent health (other than the Cancer). I've never smoked but I used to drink heavily but I haven't had a drink in years.
I don't remember collapsing. My mate said I slumped over and started shaking and sweating profusely and even though he tried to lessen the fall I still bumped myself a bit but all ok.
The only thing after I remember is the ambo's turning up and helping me get to my feet. Unfortunately I soiled myself.
I had all the tests yesterday except the MRI (which is this Friday) including a CT scan on my brain and they all came back negative.
I've done a little research ( yes I know I shouldn't consult Dr google ) and I can't seem to find any other instance of this.
I figured I'm new to this and you guys and girls have a lot more experience than me so any ideas will be greatly appreciated as I would like to pass my "thoughts" onto the Oncologist before my 3rd session.

[Deb m]

My husband had had share of side effects from folfox, but never anything like seizures or fainting. I hope they can get things resolved so you can continue on.

deb

[Beckster]

Hi 3legs...

I am a stage 2a colon cancer survivor. Diagnosed in 2016 and went through 6months of Xeloda. After chemo, I watched what I ate and exercised regularly. I turned 60 in September and had a milestone BD party, which I also celebrated 3 years NED. That night I woke up from sleep and went to get a glass of water. I was very dizzy and lightheaded and woke up on the floor. Luckily, I had my appt with my onc the next day. My blood work was great and he told me not to worry...he said I was dehydrated. To be on the safe side, I went to my cardiologist and had all the tests done. Everything came back fine. While I was in his office, he had me lay down and took by BP...he than had me stand up and took it again. It dropped 15 points. He said he thinks I have Orthostatic hypotension or vegus nerve. He has me drink 3 liters of water a day and put extra salt on my food. I am not on any BP medicine or Diuretics. Hope this helps...it sucks getting old!

[3legs]

Thanks Debm and Beckster.

It sounds a lot like that orthostatic hypotension. I'm almost certain it has been due in part to the chemo drugs as I've never had a problem with BP before and i'm certainly drinking a lot more water than I have ever had however maybe it hasn't been enough.
Once I've had the MRI this Friday and seen my Onc next Tuesday (I will certainly be passing this info to him) I will let you guys/gals know what they say.
In the meantime I will drink a little bit more.
One thing though I have decreased my salt intake (at the insistence of my wife) so I may have to increase it again.

Cheers

[Beckster]

Thanks Debm and Beckster.

It sounds a lot like that orthostatic hypotension. I'm almost certain it has been due in part to the chemo drugs as I've never had a problem with BP before and i'm certainly drinking a lot more water than I have ever had however maybe it hasn't been enough.
Once I've had the MRI this Friday and seen my Onc next Tuesday (I will certainly be passing this info to him) I will let you guys/gals know what they say.
In the meantime I will drink a little bit more.
One thing though I have decreased my salt intake (at the insistence of my wife) so I may have to increase it again.

Cheers

I never had this problem either. I drank, what I thought, was a lot of water and watched my salt intake...this happened 3 years after chemo and really pushing myself dieting. I lost 20 pounds since finishing chemo So, apparently by limiting salt on my food, my body would not hold the water in my body.... Good luck!

[roadrunner]

Alex:

I fainted (sort of, nearly) after my first FOLFOX infusion, on the 48-hour pump removal. Fortunately the infusion nurse was there to record it all. Slumped over, pulse rate and blood pressure crashed, got sweaty, clammy, weak. I underwent a ton of cardio testing, and the ultimate conclusion was that the episode was syncopal, though I had benign arrhythmias that maybe were exacerbated by the chemo. I did 4 total FOLFOX treatments (three with oxaliplatin) and did not faint again.

Thus, it might be worth ruling out arrhythmia as a cause of your problem. 5-FU (one of the active drugs in FOLFOX) is associated with cardiotoxicity, and though this is uncommon, it is not unheard of. It can manifest through vasospasm or arrhythmias (or other things). It's not entirely clear from your description whether the incident was a fainting episode or a seizure. Either, however, could at least theoretically be associated with an arrhythmia. I was told that the existence of a prodrome was a significant indication of syncopal episodes, the prodrome being a sense that you were about to pass out, visual phenomena, etc. I had those things, tried to shake them off, then fainted. Not sure if you had that kind of prodrome. My understanding is that if you did, it's more likely a typical faint, not likely caused by an arrhythmia.

I also have suffered from orthostatic hypotension for many years, and it seems to have gotten worse on Xeloda (Capecitabine) therapy (also 5-FU) -- don't recall about whether that happened on FOLFOX -- but I would say that fainting from that condition pretty much always is the result of standing up quickly from a supine or seated position (again, not sure if that was your circumstance). Finally, I also agree with the basic point that hydration, nutrition, and fatigue can all play a role -- chemo just messes with your system, so new and unpleasant things are part of the ride.

So my only advice would be to discuss the possibility of cardiotoxicity playing a role with your team, especially if it doesn't neatly fit into a syncopal or orthostatic hypotension profile. Might as well consider it, and see if they can rule it out. Hope that helps.

I would at least discuss the possibility with your team, including the cardiologists they work with.

[boxhill]

I'm another person who has suffered from orthostatic hypotension for decades, to one degree or another. Jan/Feb 2019 I suddenly started having episodes where my left hand would lose power, the left side of my face would droop, and speech was difficult because of the affected facial muscles. I went through all kinds of scans and procedures and a dreadful anti-seizure med (Kepra, which made me feel like death), and it was ultimately determined that while I do have some blockage in the relevant brain artery, it is not enough to cause the symptoms, nor do I have a seizure disorder. I just have orthostatic hypotension, that when my BP is very low to start with produces this effect. As noted above, normally this is associated with a change in posture. And, I must say, I have never lost consciousness or control of my bowels or bladder.

What you describe sounds a little different to me.

My advice is to start by ignoring this advice:

I've done a little research ( yes I know I shouldn't consult Dr google )

There is nothing wrong with research, research equals empowerment--as long as you are not the sort of person who leaps to conclusions and/or imagines that they have every malady they read about.

[kandj]

I agree on the orthostatic hypotension. My Dh had a syncope episode the day he was diagnosed and a few months ago in urgent care when he had pneumonia. Both cases sound exactly like what you are describing. I didn't witness the first one (I was downstairs with the kids while he was seeing his doctor). I did witness the second one and he went rigid and stopped breathing for a second. It was terrifying. I thought he was dying right in front of me. They were wheeling in the oxygen when he came to. Both episodes had a loss of urinary function. For him I think it is linked to low blood pressure and a vasovagal response.

[3legs]

Thank you everyone.

I will pass/show this to my Onc when I see him next Tuesday.
They gave me anti seizure drugs but I haven't taken any because I want to know if it's a one off or not.
I have the Folfox every 2nd Tuesday (for 12 sessions. Next Tuesday will be the 3rd session) and the bottle taken off after 46 hours and from now on I will give it a full 7 days before before getting into a car.
At the moment I'm feeling pretty good (next round is next Tuesday).
I will let you know the outcome of the MRI (scan today) and any other info as it comes to hand.
Once again, thank you.
It really is nice to know i'm not alone.

Alex

[DBF]

Hello, I’m sorry you went through that. Seizures can be pretty scary- especially not knowing what caused them and if/when they will happen again.
I had seizures caused by oxaliplatin back when I was on FOLFOX. I was put on oxtellar, a seizure medication, which seemed to work, but I had a number of focal seizures that caused some temporal lobe issues before getting it under control. I stayed on Folfox for the 12 rounds. I’m pretty sure it was the oxaliplatin that caused the seizures rather than the 5fu. I was later on Xeloda (basically the pill form of 5fu) without any seizure issues.
Hope you get it all figured out.
Best,
Donna