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May 31, 2017 08:02AM
Yes, it's strange to have something that my oncs seem to have such little experience in.
My RO seemed to think I don't have LM or I would have deteriorated much more quickly. He thinks anyone who doesn't die in 3 months doesn't have LM. I respect him immensely, but this seems to be an area he does not know as well.
My initial symptoms were a numb right side chin and weird sensation on my cheek and temple. That was in November and they at first thought it was a mini stroke. I was out of state. When I got home I had an MRI that seemed fine. One month later another MRI showed the lesion above my right eyeball in the lining/fluid area. I had rads on that.
I had just started Xeloda during this time (failing Faslodex). I took some Dex during rads for swelling (hated it). Rads ended the end of March. Follow up MRI was good. Lesion reduced, nothing else scary floating around.
But since the end of March I have been absolutely drained. No energy at all. A few quick stabbing pains in my head. Weird, vibrating sensations in my groin and the feeling that something is wrapped around my left ankle. All weird stuff I don't know how to interpret.
I was on low dose prednisone for 2 weeks and I think it helped the fatigue. Stopped it last Thursday and hit the tired wall again Saturday.
Today is my regular check in with MO. I'm anticipating she'll put me back on prednisone a while.
My husband wants a CURE for the fatigue. He's having trouble accepting that I may feel like this for a while.
Hoping for good answers for us!!
Thanks! There are so few to talk to about this.
8/2005, DCIS, Left, Stage 0, ER+, HER2+
5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+
6/2013, Stage IV, metastasized to bone, ER+, HER2-
Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Abraxane (albumin-bound or nab-paclitaxel)