Today I called his office asking for an earlier appointment- as my hip (right over the first bone met) began hurting again. I'm hoping that I can convince him to call my insurance company and get them to pay for TDM1 off label for me. It was only recently approved by the FDA, and from what I hear it still isn't official (?) I've heard rumors that TDM1 is like 10,000/month, but thankfully insurance companies have to pay for it after the FDA approves it. To use it as it was (or will be) FDA approved would be to take it with Taxotere (bye bye hair), but getting him to give it to me off label would mean he could combine it with any therapy. TDM1 is a herceptin antibody with a chemo agent attached to it- so it is highly selective and highly toxic. Currently I am getting herceptin, and taking oral tykerb and femara and no actual cytotoxic chemotherapy (which has been nice).
Although I know waiting one month isn't going to change whether my cancer responds to TDM1- I am paralyzed with fear that it could jump to my brain, my liver or my lungs in that amount of time. Plus I'm shocked that the anti-estrogen therapy hasn't been all that effective. I know by calling his office today- he'll probably set me up for another PET scan, which is torture on the nerves, but I'm willing to do that if it means I can get TDM1.
