› Forums › Caregiver Community › Back in the hospital – brain met setback
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CyberKnife.
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- June 11, 2011 at 12:53 pm
My wife Meagan, who just had two deep skin tumors surgically removed on Monday, had a big set back. On Wednesday she had four seizures. Ended up in emergency room and ICU. She is still here, and we will be here through Monday. For those of you who have brain mets, or have been treated with brain radiation, or who think you might get brain mets, read on.She had an initial CT scan which revealed no tumors large enough to identify at the CT resolution. She underwent continuous EEG monitoring and the neurologists discovered she had two things going on. Despite heavy doses of steroids and anti-seizure medication she is having continual sub-clinical seizures (no outward physical manifestation) which affect her mood and aren’t good generally. So they are boosting the med cocktail to try to control this. Because we don’t want to go the super aggressive route which is induced coma and different meds and intubation. The other thing they discovered through the EEG is the subclinical seizure activity is coming from the right side of her brain, which is not the site of her previous two tumors, brain surgery and Cyberknife treatment. So the suspicion is the brain irritation which triggered the seizures was not from the previous site but thus new zone. She had an MRI late last night and we expect results today. Probably another tumor or two which will need to be addressed.
While they can be Cyberknifed the issue is it sets us back again another 2-3 weeks before she can do IL-2. Once it gets to the brain it just is damn difficult even though you can zap those brain mets over and over, your body is left untreated. She doesn’t even want a body CT scan at this point to know what else is happening beyond the known lung tumors.
The lesson I learned in all this is to call 911 if your melanoma person exhibits any strange behavior. In our case my wife was on the phone and suddenly lost the ability to talk or recognize her boys or me, who were both there. We called our Cyberknife radiation oncologist right away thinking it was some side effect from her recent treatment. They said no, get her to ER. We live pretty close to our oncologists hospital and ER so we put her in the car and I drive like a nay out of hell to get her there. But within two blocks of the ER she had a grand mal seizure. I had her there in another two minutes and the emergency team had her on the table to handle her next two grand mal seizures before all the medications kicked in and she was out. But apparently all our city 911 response vehicles have anti-seizure meds on board and could have administered it and she would have been strapped in to a gurney even though at the time we left home she was calm, quiet and seemed to understand what we wanted her to do. In our case I was just lucky. I was able to control her grand mal seizure in the car we were so close to the ER that she got medicated quickly. But I was admonished to next time call 911.
So we wait for results and spend another week in the ICU. I really hate these recliners they call beds for the overnight stays for the caregivers. Not much sleep.
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- June 11, 2011 at 4:14 pm
Nickmac,
I'm sorry all this is happening to your wife, you, and your sons. We'll be holding you all in prayer and wishing there was something we could physically do to help. You're lucky to live so close to an ER. In telling your story, you passed along a lot of useful info and tips. Thanks.
BTW, have you talked to anyone about getting more comfortable sleeping arrangements? It never hurts to ask.
Lord, in Your mercy. Amen.
Grace and peace,
Carol
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- June 11, 2011 at 4:14 pm
Nickmac,
I'm sorry all this is happening to your wife, you, and your sons. We'll be holding you all in prayer and wishing there was something we could physically do to help. You're lucky to live so close to an ER. In telling your story, you passed along a lot of useful info and tips. Thanks.
BTW, have you talked to anyone about getting more comfortable sleeping arrangements? It never hurts to ask.
Lord, in Your mercy. Amen.
Grace and peace,
Carol
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- June 11, 2011 at 6:15 pm
I hope they get this all under control and please let us know what the scans show!
I started having behavioral changes about three months before the undiagnosed tumor in my brain started bleeding requiring me to be airlifted to a neurosurgical ICU. I had no idea that was a symptom along with the early morning headaches and fatigue.
It was very subtle with me – I'm normally sort of a Type AAA personality and a real 'project finisher'. Suddenly I found myself not only unable to finish projects, I couldn't even start them. This was so shameful for me that I couldn't tell anyone, not even my counselor.
My onc told me that if I had told her these three things, she would have immediately scheduled me for an MRI and we could have stopped it before it bled. Now I have an agreement with my counselor that if I find myself behaving outside of what is normal for me, I will call her and she will help me to decide if I should call my onc.
So yes…don't ignore even suble changes in behavior! My prayers that your wife will be back on her feet and all resolved soon!
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- June 11, 2011 at 6:15 pm
I hope they get this all under control and please let us know what the scans show!
I started having behavioral changes about three months before the undiagnosed tumor in my brain started bleeding requiring me to be airlifted to a neurosurgical ICU. I had no idea that was a symptom along with the early morning headaches and fatigue.
It was very subtle with me – I'm normally sort of a Type AAA personality and a real 'project finisher'. Suddenly I found myself not only unable to finish projects, I couldn't even start them. This was so shameful for me that I couldn't tell anyone, not even my counselor.
My onc told me that if I had told her these three things, she would have immediately scheduled me for an MRI and we could have stopped it before it bled. Now I have an agreement with my counselor that if I find myself behaving outside of what is normal for me, I will call her and she will help me to decide if I should call my onc.
So yes…don't ignore even suble changes in behavior! My prayers that your wife will be back on her feet and all resolved soon!
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- June 12, 2011 at 1:15 am
I'm so sorry to read about your recent events. Thank you for taking the time to share some very important facts that we all can learn from.
You are in my thoughts and prayers. One day at a time. Please keep us posted and take good care of yourself. Your rest is very important during this stressful time.
Stay Strong
King
Stage IV 7/05 Liver mets
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- June 12, 2011 at 1:15 am
I'm so sorry to read about your recent events. Thank you for taking the time to share some very important facts that we all can learn from.
You are in my thoughts and prayers. One day at a time. Please keep us posted and take good care of yourself. Your rest is very important during this stressful time.
Stay Strong
King
Stage IV 7/05 Liver mets
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- June 15, 2011 at 8:20 pm
Hi there,
I've been following your wife's story online ever since she had her CyberKnife treatment. I work for the public relations team who supports Accuray, the makers of the CyberKnife. Accuray is constantly on the lookout for patients and are curious to learn about their experience with the treatment, etc. Sometimes we even use patient stories in media opportunities.
I would love to talk with either you or your wife regarding the treatment if you would be interested in sharing your story. Please feel free to contact me at [email protected] at any time.
Best,
Taylor
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- June 15, 2011 at 8:20 pm
Hi there,
I've been following your wife's story online ever since she had her CyberKnife treatment. I work for the public relations team who supports Accuray, the makers of the CyberKnife. Accuray is constantly on the lookout for patients and are curious to learn about their experience with the treatment, etc. Sometimes we even use patient stories in media opportunities.
I would love to talk with either you or your wife regarding the treatment if you would be interested in sharing your story. Please feel free to contact me at [email protected] at any time.
Best,
Taylor
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