When I started having severe headaches back in November 2023 that were not my typical kind of migraine, I became worried. These headaches were on the side of my head and at the front of my skull and they lasted for days. I spoke to my oncologist about these headaches after five days of them not going away with my migraine meds, and she ordered a brain MRI.
Thank goodness I spoke up because it revealed that I had two spots in my dural cavity, and eventually, a third spot that grew near my left ear. After getting a neurooncologist, I endured three rounds of gamma knife to my brain. I also had testing done for leptomeningeal brain disease, a deadly aggressive brain disease. My spine MRIs and spinal fluid both showed negative for it, but it still didn’t clear me.
What is leptomeningeal disease? It means it has spread to your spinal fluid and leptomeningeal areas. Side effects are nausea, confusion, vomiting, double vision, seizures and so on. It’s a deadly disease and when left untreated, it’s a scary thing to beat.
After my gamma knife radiation was over, the left side of my face drooped, and I was left with facial paralysis. My cheeks and eyes were numb and I couldn’t smile very well. I called 911 not knowing if it was a stroke or something else and got admitted to the hospital for three days around Christmas.
That was an incredibly hard time in my life — being hospitalized at Christmas — and having my face droop. I also knew that my brain was just not working properly. While being hospitalized as a neuro patient, I underwent further scans (brain MRI) and additional steroids to help with facial swelling.
Once I was released from the hospital on Christmas day, I spent the rest of 2023 getting chemotherapy (Trodelvy [sacituzumab govitecan]) and meeting with my neuro team to understand what was happening with my face. My team believed (and still believes) that although all of the tests showed no evidence of leptomeningeal disease, my facial issues of drooping continued. Now that third spot near my left ear has begun to show early signs of leptomeningeal disease.
I don’t have a textbook case of leptomeningeal disease, but my doctors are concerned that everything is starting to point in the direction of that disease. So to treat this, I got five more rounds of radiation to my face and ended up partially losing hearing in my left ear. I also got an Ommaya brain pod surgically placed, which I will have treatment directly put into my brain. This will avoid my veins, and act like a normal port but will give me fewer side effects.
The treatment will either be Herceptin (trastuzumab) or Herceptin plus Perjeta (pertuzumab). I’m waiting to find out whether I can qualify for a clinical trial for HER2-positive status of my CSF fluid. Either way, the Ommaya pod will be utilized, and I will get this treatment on top of Trodelvy.
Overall, three months ago, I was extremely scared and nervous about my brain metastases. Now I feel a lot more informed having a dedicated team on my case.
It is wild to me to know that it’s not all black and white for leptomeningeal disease. For me, I’ve become so involved in learning about the brain, my side effects and what part of my brain function I am losing.
I still work full-time and want to be able to continue to do so. Thankfully, my support system and Team Sunshine have been immaculate in providing love, care and help.
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