Just hoping to help you. I knew that link wasn't for perjeta but I thought it might be worth a try anyway, rather than nothing and you never know what could pop up. Keep monitoring. And, Lapatinab is one of the few drugs that crosses the blood brain barrier so could be helpful in preventing brain mets.
You aren't allowed to change doctors????? That is HORRIBLE. Truly unbelievable. I don't like your doctor just based on what you've said and you are trapped with him?! I am shocked, really. No offense to Canadians but I sure hope our health care system doesn't go down that road. It may not be perfect but we have freedom to choose who are physician is, it's not a freaking marriage.
That just means that you need to do the research and stand up for yourself because he isn't going to do it for you. I also found some links to charities in Canada that cover the costs of drugs when the government won't do it. I think it was in the third link somewhere. So you might contact them and see what they can do and what advice they can offer.
It sounds like they cover hospice - are you confusing them withdrawing herceptin with progression as the same thing as entering hospice? Because usually, when you go into hospice, you stop all medications and chemos and just do comfort care. But if you are still being treated, even with progression they should keep you on herceptin. My doctor says I'll be on herceptin for the rest of my life no matter what else I'm one - while I've progressed on it, we don't know how badly I would have progressed without it do we?
Something sounds really off. I would not rely on your doctor for information. And, bloggers know some stuff but they also know their own situation, so I might find somebody in government to ask these questions. Who oversees all this? Can you call the Ontario Health Ministry and get some names and see what they cover, why and when? I would start out getting some really good information so you know where to go because it sounds like right now, you aren't getting the right info.
And if you don't like your oncologist and you want to change and there is an ombudmsman, why not just contact him and tell him you don't trust your doctor and want to switch? What's the worst that can happen - he says no? It's worth a try. Sounds like you need at least on person on your side.
Did you call genentech yet? They are super nice there. They know the laws, maybe better than your doctor does, so I'd start there.
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http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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