Hi Teagan,
I feel for you & your Mum and apologise for taking so long to reply.
I am stable again, per my latest scans about 10 days ago. We've paid for four cycles now ($12,600 + compounding fees for the two "free" doses I've had from Roche through their compassionate access program, where I get every third dose free). It's proving very stressful to be honest, watching our mortgage grow again. And because I'm getting Taxol with the Perjeta & Herceptin, I'm not feeling super either. My goal in paying for Perjeta was to hopefully feel as good as I did when just on Herceptin... it hasn't come to fruition yet :> I have asked my Onc how long I'll be on Taxol, but she hasn't given a target number of cycles. I will soon need to decide if I can afford to wait for the quality of life benefits of Perjeta & Herceptin without a cytotoxic agent.
I honestly hope BCNA is advocating to have Perjeta available as a subsequent line of treatment, just as they plan to for the newly approved Ibrance. Now I know Perjeta is working, I plan to make an appointment with my Federal MP to explain it's the hope offered by new treatments coming in the pipeline that enables MBC patients and families to look toward the future & get through the tough days. If these new treatments are inaccessible to existing MBC patients, it takes away that important hope. And the total cost to the PBS is similar as if I'd gone onto TDM-1 anyway!
My best wishes for your Mum and the decisions ahead, I'm sorry my answer is not definitive either way.
Keely
