Hi all
im sorry if this has been brought up before. I have recently been diagnosed with a chordoma on my sacrum and can’t seem to find anyone else who’s had this.
I’m 31 and terrified of the aggressive surgery they’ve described which could leave me incontinent and with loss of mobility.
I am getting feeling back in the leg that’s supposed to get worse so I don’t know if I dare be cautiously optimistic.
Hi Melo
Sorry about the delayed reply. The current plan is a trial drug called Afatinib.
I sometimes wonder if I made the right decision but I don’t believe I was fully informed at the time.
But your situation sounds so positive.
I guess I’m as well as can be given my current situation, just hoping the doctors can take me seriously and help me find a treatment that works.
Keep well,
Amy
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