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CoolBreeze · 11-02-2013, 07:37 PM

I don't understand any of that - in fact, it sounds so wrong to me that I'm starting to wonder about your oncologist.

First, while I don't have to pay as my insurance covers it, I do get copies of my drug bills and Perjeta is on the bill. Nothing on the bill has ever said $6,000.00. I think it's about $3,000 but I don't want to swear to it as I really don't pay that much attention. I'll look next time.

What's weird is your oncologist says it's overpriced and not worth it? To whom? Look at my list of drugs. Perjeta is the one that's worked for me and has allowed me to have a minimum of six months more and who knows, maybe a lot more. That was after I progressed on herceptin. All the studies show that it works very well, so I would ask him why he has the opinion he does?

Or is he saying what I was saying before - that it's not worth it to bankrupt your family to pay for it? Okay, but that isn't his decision. All he should do is give you the odds of effectiveness but you can look that up for yourself.

I don't understand your Ontario legislation but after reading what you say it needs a lot of work and maybe you could work to change that. Because, it doesn't make sense. I know nothing about your government - are you represented? Because, I'd be calling my congress people, my representatives, etc.

Why would progression on herceptin mean you aren't allowed perjeta? They aren't the same drug, they do different things.

It's like saying if you progress on one chemo that you can't have any more of any kind. One chemo kills cells in one way and another chemo kills cells in another, and that's what perjeta does. And, then there is Kadcyla, another drug that also acts on HER2 - can you have that?

It flat out makes zero sense for that to be a law, that you can't have it if you progress - it's backwards. Medically, it makes no sense.

Now, if they are saying nobody in Ontario can have any drug that costs a certain amount, than I guess you come to the US if you can afford it.

I know a woman who works for Genentech and next time I see her I'm going to see if she knows a way to help you. I might see her on the 6th.

This is why we should never let bureaucrats make medical decisions!

11-02-2013, 07:37 PM	#18
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Liver Mets I don't understand any of that - in fact, it sounds so wrong to me that I'm starting to wonder about your oncologist. First, while I don't have to pay as my insurance covers it, I do get copies of my drug bills and Perjeta is on the bill. Nothing on the bill has ever said $6,000.00. I think it's about $3,000 but I don't want to swear to it as I really don't pay that much attention. I'll look next time. What's weird is your oncologist says it's overpriced and not worth it? To whom? Look at my list of drugs. Perjeta is the one that's worked for me and has allowed me to have a minimum of six months more and who knows, maybe a lot more. That was after I progressed on herceptin. All the studies show that it works very well, so I would ask him why he has the opinion he does? Or is he saying what I was saying before - that it's not worth it to bankrupt your family to pay for it? Okay, but that isn't his decision. All he should do is give you the odds of effectiveness but you can look that up for yourself. I don't understand your Ontario legislation but after reading what you say it needs a lot of work and maybe you could work to change that. Because, it doesn't make sense. I know nothing about your government - are you represented? Because, I'd be calling my congress people, my representatives, etc. Why would progression on herceptin mean you aren't allowed perjeta? They aren't the same drug, they do different things. It's like saying if you progress on one chemo that you can't have any more of any kind. One chemo kills cells in one way and another chemo kills cells in another, and that's what perjeta does. And, then there is Kadcyla, another drug that also acts on HER2 - can you have that? It flat out makes zero sense for that to be a law, that you can't have it if you progress - it's backwards. Medically, it makes no sense. Now, if they are saying nobody in Ontario can have any drug that costs a certain amount, than I guess you come to the US if you can afford it. I know a woman who works for Genentech and next time I see her I'm going to see if she knows a way to help you. I might see her on the 6th. This is why we should never let bureaucrats make medical decisions! __________________ 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.