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Brain SRS and seizures

Forums General Melanoma Community Brain SRS and seizures

  • Post
    RichInLife2
    Participant

      I have SRS for my one brain met scheduled for next week. As the usual part of every treatment consultation came the part where they list all the possible side effects. I know they have to inform the patient of every bad thing, but it's still kind of scary. For me, the two most unsettling possibe side effects were vision loss (partial or complete on one side) and seizures. The scariest part is that these could happen moths or years down the road, so in addition to worrying about melanoma, I'll always have to worry about these side effects, too.

      Anyway, the risk of not treating the tumor outweighs the risks of side effects from treating it. My current goal is to live long enough to be able to worry about long-term effects.

      There's not much I can do about the possible vision loss, but the doctor has prescribed anti-seizure medication (keppra). The plan is to take it two days prior to the procedure and for about a week after. There's also the possibility of taking the keppra indefinitely, but I'd rather not if I can avoid it.

      My question is this. For those of you who've had SRS for brain mets, have you ever had seizures related to the SRS? Has anyone taken anti-seizure medication, particularly keppra and what has your experience with it been?

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    • Replies
        Abbygx2589
        Participant

          My father had SRS on two small and one large spot and did not experience any seizures. Hope this helps!

          Mat
          Participant

            SRS is by far the easiest melanoma treatment I've had (twice).  I understand your concern, but I would view this as routine legal disclosure.  If you are with a top institution with top neurosurgeons, I wouldn't worry about it.  An untreated brain met presents a much more substantial risk.

            doragsda
            Participant

              My wife had SRS (gamma knife) on two spots – a 10mm tumor in the left front of her brain, and a resection cavity from the removal of a 26mm tumor in her cerebellum.   The resection cavity took 8 different shots of radiation to hit it all, the tumor just one.   This was just a little over 1 year ago.   She had some mild radiation necrosis in December in the cerebellum, but it was easily controlled with Avastin, but no seizures or other adverse effects.   She is currently NED – the SRS did its job and killed the melanoma in her brain!

              marta010
              Participant

                Hi – my husband has had 5 gamma knife procedures and did not experience seizures after any of them but has had a few issues with brain edema – usually long after the procedure.  He has been on Keppra for 6 years and while it did cause fatigue initially, he has adjusted to it and doesn't notice any other side effects.  Not sure how large of a tumor you're having zapped but you'll likely rebound pretty quickly with little more than a headache after the first day.  Take care!

                Ann

                I've had SRS on post craniotomy site when the tumor started regrowing.  About one month later I started experiencing mild seizures.  I've been on keppra since May 2017.  I did try going off but ended up having additional seizures so I went back on.  I did adjust to it and it's just part of life now.  Given the placement of my met and SRS my long term side effects include permanent hair loss and increasing numbness or loss of feeling in my right foot.  My neurologists seem to think that the seizures are due to the craniotomy and not the SRS.  I do have fatigue but don't know if that's from the keppra or the immunotherapy.  I don't seems to have any other side effects from the keppra although my husband does say I'm a bit cranky sometimes.  Well, who isn't dealing with all of this but yeah maybe it's the meds.  

                The idea of radiation to the brain is scary but it really wasn't bad for me.  The hardest part was the mask.  It was always the best when they took it off.  I was very nervous but again glad I did it.  I didn't want to do a second craniotomy.

                Good wishes to you.  

                Jennifer

                cancersnewnormal
                Participant

                  I was put on Keppra from the beginning… but then… we discovered I was stage IV via a grand mal seizure… soooooo. I've undergone 10 rounds of gamma to treat 39 lesions during a 2 year period. On Keppra the whole time… still on Keppra. Nobody is sure if I could ever come off of it or not. I've had no side effects from it for over 5 years now, so I just pop my pills twice each day, and live life as I did before the cancer came along. Seizures can vary greatly in strength and length, so when doc's warn you about them, they're not necessarily referring to the drop to the floor unconcious and twitching sort. Due to some late treatment swelling of a lesion, I had a seizure involving only the left side of my face and left hand. It took quite a large amount of edema and my brain shifting left of center to finally overpower the Keppra dose… which at the time, was the minimum 500 x2 daily. I've also had the oddball "micro seizures" since that point in time, about 1 to 3 per year. They involve a pins and needles feeling in my left corner of my mouth and a few fingers on my left hand. They last about 30 seconds to 2 minutes and they're gone. Not sure how much more harsh they may or may not be if I weren't still on the keppra, soooooo… for now, I'm going to continue having the prescription refilled indefinitely. 🙂  Sure beats having active brain mets though!

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