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CoolBreeze · 05-27-2018, 01:51 AM

I’m pleased that I recognize many names still, that’s a good sight!

Maybe nobody remembers me but that’s ok. I’m trying to find people who have been on Kadcyla longer than me, which is about 3 years now. (I forget!)

I’m also trying to find people who have been doing actual chemotherapy for ten years, give or take by a few. I know the AIs and Tamoxifen meds suck but I’m interested in the actual infused chemos where we are still tied to that space, years later.

This may get written in my blog but mostly I’m curious. Those things don’t show up on a search, which is shameful. I want to change that and let people know we metsters can hang in there.

I remember being told I’d be in chemo for life, but at the time I thought it would be 2 years. Now that many of us are living much longer, I think our lives should be represented and more people should know how long we. An fight. I know many years of going In to chemo has changed somethings about me (mostly that I spend ten days a month sick) but other things too.

Hugs to all you amazing women.

05-27-2018, 01:51 AM	#1
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Long time, no see! I’m pleased that I recognize many names still, that’s a good sight! Maybe nobody remembers me but that’s ok. I’m trying to find people who have been on Kadcyla longer than me, which is about 3 years now. (I forget!) I’m also trying to find people who have been doing actual chemotherapy for ten years, give or take by a few. I know the AIs and Tamoxifen meds suck but I’m interested in the actual infused chemos where we are still tied to that space, years later. This may get written in my blog but mostly I’m curious. Those things don’t show up on a search, which is shameful. I want to change that and let people know we metsters can hang in there. I remember being told I’d be in chemo for life, but at the time I thought it would be 2 years. Now that many of us are living much longer, I think our lives should be represented and more people should know how long we. An fight. I know many years of going In to chemo has changed somethings about me (mostly that I spend ten days a month sick) but other things too. Hugs to all you amazing women. __________________ 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.