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May 24, 2013 at 8:55 pm #21310NZjanetParticipant
Last Saturday I experienced my very first seizure. I had an inkling all week that something was not quite right. My right hand was slightly tingling off and on all week, then I had briefly lost motor control of right hand for about 15 seconds on the preceding Wednesday.
Saturday, alone watching TV, I had a full blown seizure. I remember losing control of my right hand again, but then it clawed, and my right side curled. About 30 or 40 minutes later I regained consciousness, then had my first ride in an ambulance.
All very, very scary. A CT scan has revealed more than a dozen Mets evenly spread around my brain. I’ve been taken off the drug trial, zelboraf, which right now feels fantastic – I have my body back….
I began whole brain radiation treatment yesterday. I have 4 more next week, trying to stun them. I’m also on a steroid to reduce any further swelling. Hopefully no more seizures. I have been told 3-6 months, and they’re talking palliative care, but I’m wishing for a miracle. I have been living with this for a good part of my life. It just seems too short now.
I am no longer allowed to drive, or be alone for now. If I stabilise for a time, then maybe I’ll regain some independence.
Janet.May 24, 2013 at 11:13 pm #60908SusanBParticipant
Janet, I am so very sorry you have had this frightening experience . My thoughts and prayers are with you. Take courage!May 27, 2013 at 9:00 pm #60909NZjanetParticipant Thank you Susan for your kind thoughts.
I had my second WBR session yesterday, still no side effects. This all feels so surreal. Apart from a slightly muddled brain I am feeling great. It’s hard believe I’m a ticking time bomb!
I have a mantra which I’m spreading around the world – THE METS ARE MELTING AWAY……..
Give me some hope – please.
Janet.May 27, 2013 at 9:17 pm #60910buffcodyParticipant
We’re facing “somewhat” similar scenarios. My first seizure was a week before yours. Also EMS to the hospital. Fortunately my wife was with me. Swollen brain tumor, new one, the cause. Only one found. I had two previously radiated, which have since disappeared. That part is I hope your experience. The first one showed up in October.
I’ll find out Wednesday what the plan of action is. I’m happy to report, if the decision is surgery, the tumor is small and easy to get to. I feel the drugs for sure. Anti=seizure and corticosteroid for anti-swelling. Doesn’t feel like normal, but it hasn’t been bad. Apparently the dosage of the latter is heavy, but they are cutting back a little at a time. Sleeping has been interrupted in the middle of the night.
I will be hoping for the very best outcomes for you, better than it may look at this particular slice of time.
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