I had a MRI and appointment with the oncologist this week. The MRI showed a lot less swelling and blood products around the new growth. The growth did not change in size, which is awesome news. I was gravely concerned that seeing the rate at which this came on that it would be taking half up my brain by now. The doctor attributed this improvement and stability to the Avistan. With that, we are going to wean off the decadron steroid - good grief, this makes me so hungry I literally put on 10 lbs in the past month. Eating so much makes my digestive system very uncomfortable. My poop shooter is happy with with a 2 or 3 small meals a day. I've been eating 4,5,6 times a day.
My worries have been fueled by my ongoing muscle spasms in my legs, and have recently started happening in my hands. I have such bad episodes that I could not stand/walk for a day following. The doctor sort of ruled out that these are seizures because they are happening on both sides of my body. With the tumor on the right, he would only expect these types of problems on the left. We're looking into deficiencies in my blood work to explain this. I suspect some of the problem is rooted in the extreme stress of the whole situation. I need to put some meditation into my daily routine to calm my inner self.
Going forward I'll be getting the Avistan every 2 weeks and an MRI every 8. It was discussed when we started the Avistan that there is no prescribed number of cycles similar to chemo. This will continue as long as it's "effective" in holding the growth back.
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