Unfortanetely I may have taken a turn for the worse on Easter night. After eating dinner at a friends house she took us for a walk around her property. I had to turn back and head for home knowing how steep it was going to get. I still had to stop about 4-5 times to catch my breath. That night I crawled into bed completely over-exhausted. Around 12:30 I got out of bed to go to the bathroom and ran into the wall. My balance was off and I was afraid I was starting another brain event. I told hubby to take me to the hospital but the more I walked around the bedroom collecting stuff the better I felt. So we stayed home-- I got up around 2 -3 more times for BMs (kind of weird), but my energy has been way down since then. My balance is still not right. Dr. S. doubled my steroids to 4 mg BID which has helped the balance, but the weakness and fatigue are profound.
Our family went to Gatlinburg for Easter break. The first 2 1/2 days I stayed in bed; then Friday I was able to go out with everybody for a few hours in the wheelchair. I've been resting since we got home yesterday, and I definitely feel better on the oxygen.
Question--can the halaven cause profound fatigue, even in my week off? I'm assuming that I'm in my Nadir period, at least from the second treatment.
I'm supposed to find out tomorrow if I'm a candidate for cyberknife radiation to my one new spot in my pons. Oh, and my sister Ann surprised me from Idaho by just showing up for my early birthday present. She has been a godsend. Knowing your experiences on halaven would be helpful.