Yesterday my oncologist told me to go to the ER again, so I did. I had a headache on the same side of my head where the met was removed (8/24/18) for a few days, just not that bad. My seizures weren’t so far apart lately either. This headache began when my seizure medicine went above the standard dosage and likely causes dizziness and headaches, so I wasn’t too worried on top of nivolimab’s common side effect of headaches and sensitive eyes. I receive another MRI, the last one was 4-5 weeks ago, however this one’s summary says I have an ~1x.5cm tumor that was hemorrhaging. The surgery I had prior would basically make any more brain surgery in that site a likely removal of self, so that was very sad for a few people. Oncologist said current bleeding on an MRI can be misconstrued by old bleeding, and called a CT. The CT summary said there is no bleeding.
We haven’t seen oncology yet, or fully discussed treatment, changing or not, but my point is that there is always hope for us. My nurses husband had Melanoma in 2008, on his calf, just a simple diagnosis these days. The man passed away 11 months later because the treatment we are lucky to have access to today didn’t exist then. More than one person has said to heal your head to heal your body, so make sure you try. We are very lucky unlucky people 😊.
Ryan
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Oh Ryan sorry to hear about your new roller coaster ride! It seems like there is always something new to contend with. Let us know when you know more, but I like your approach to healing your head to heal your body. I think you are doing great working on that and I will try to as well.
To update my story...much confusion and lack of answers has been out. Each doctor on my team has spoken with each other, and we have finally agreed. A second craniotomy.
After several tries of huge steroids, besides an addition of 60 pounds and terrible skin, nothing has changed within my brain. The steroids have only kind of served my side effects of swelling which saves me from seizures and lack of adult vocabulary. So I will be having the second craniotomy next month in order to remove the necrosis caused by my radiation and check the tissue with pathology. This time I will be awake for a moment in the surgery to make sure my speech doesn’t get harmed and I will actually be bringing a guitar so I can hopefully keep that.
The Johns Hopkins tumor board actually believes that there is no tumor to worry about and it’s just radiation necrosis, and the surgeon believes that there will be no problems taking a bit more tissue. If anything, the seizures will have less of a change which means I may even drive in the future.
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