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Old 04-04-2013, 04:27 PM   #24
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: "More than 20 lesions" - MRI report

Penny, I'm so sorry to hear the news. I remember how upset I was, after having a liver resection, to have cancer grow back. I mean, I cut out half my liver!! All that pain and suffering and even going septic, all those articles about oligomets and living 10 years cancer-free - and I didn't even get a year without cancer. It's hard to face all this failure when you are doing everything in your power to help yourself but sometimes that's the way it works.

But, TDM1 is different than herceptin, and here is the way it was explained to me, but ask your doctor, and take it for what it's worth: Herceptin gets to a tumor and targets the HER2 protein, but not the HER3 or 4, which is why it only works for about 20% of us. We are overexpressing more than just HER2. TDM1 takes a specific chemo and molecularly binds to it, and hand-delivers it directly to the tumor. This is a chemo we wouldn't be able to tolerate if it was just pumped into us, it's so strong, but because it binds with the TDM1, we can handle it. And, the herceptin part also targets other HER2 proteins. SO it is NOT the same thing. That is why it is working on women who have progressed on herceptin. I mean, you can't get it until you have had failure with a taxane and herceptin and it still works for many of those woman, right?

It doesn't work on all of them, but it works on some. So I can't think of any reason not to try it. It will be my next chemo and had I not gotten regression with Gemzar, I'd probably be starting it next week.

I'm incredibly impressed that you have been able to continue to work. There is no chance that I could have held down a job this past year. I gave mine up nearly a year ago - it was a terrible decision to have to make but I was only working half time and I knew I couldn't go back to full time. I was right. So now I'm on disability which isn't much money but helps. I also spend almost nothing if that helps you. I used to be buzzing around, shopping, buying food, spending money and now I don't leave the house much so a lot of my expenses have gone. Maybe you didn't do that but not spending money helped us stay within our budget.

The fact that you have worked going through all of what you have is amazing and shows what a strong woman you are. And, your fight isn't over yet - get on TDM1 and get yourself NED, is what I say!
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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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