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CoolBreeze · 03-16-2013, 04:38 PM

I know a few of you were on the trial or have gotten this drug.

Seven different chemos and a liver resection have not stopped my liver mets from progressing. Currently, I have been on gemzar, herceptin, zometa and perjeta. But, I am no longer able to tolerate the gemzar. (In fact, I've never been able to complete a full round.) My doctor is going to put me on TDM1 as soon as he gets it in his office.

Even though I have recalcitrant liver mets, it's still only in the liver, at least it was at last PET. If we can shrink this sucker down off the structures its endangering, maybe we can do RFA again. (I had microwave ablation with my resection).

I am curious to know if anybody who failed on so many drugs got any use out of TDM1? Did you progress, regress, or go NED, or what? Were there any side effects, like with chemo? What was your experience?

I am trying not to hold out too much hope since nothing has worked for me. I do want to see my son graduate from high school, and it would be nice to feel well enough to take him on a college visit or two, which I currently am unable to do.

Thanks in advance.

03-16-2013, 04:38 PM	#1
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	TDM1/Kadcyla Experiences I know a few of you were on the trial or have gotten this drug. Seven different chemos and a liver resection have not stopped my liver mets from progressing. Currently, I have been on gemzar, herceptin, zometa and perjeta. But, I am no longer able to tolerate the gemzar. (In fact, I've never been able to complete a full round.) My doctor is going to put me on TDM1 as soon as he gets it in his office. Even though I have recalcitrant liver mets, it's still only in the liver, at least it was at last PET. If we can shrink this sucker down off the structures its endangering, maybe we can do RFA again. (I had microwave ablation with my resection). I am curious to know if anybody who failed on so many drugs got any use out of TDM1? Did you progress, regress, or go NED, or what? Were there any side effects, like with chemo? What was your experience? I am trying not to hold out too much hope since nothing has worked for me. I do want to see my son graduate from high school, and it would be nice to feel well enough to take him on a college visit or two, which I currently am unable to do. Thanks in advance. __________________ 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.