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CoolBreeze · 06-08-2013, 01:14 PM

I have been on herceptin 4 years now - I can't say it doesn't work because you can't prove a negative. I have progressed and gone metastatic on it, but maybe if I didn't have it I'd be gone by now, so maybe it's slowing progression some. It isn't working perfectly but it might be helping, who knows? That's why my doctor keeps me on it.

I saw my first shrinkage on gemzar and perjeta. Gemzar is very tough on my marrow and I can only get one infusion a month now as it takes that long for my blood to recover, but it seems to be holding steady at 3 cms, and I am in prep for SBRT.

My understanding of why TDM1 works when herceptin may not is because it is herceptin along with a very powerful chemo drug. The drug, without the herceptin part, can't be given alone, it would be too toxic. But when mixed with this formulation of herceptin, it guides the chemo directly to the cancer cells and nowhere else. So it is not as hard as a regular chemo and it works better. That may be a layman's understanding, but that's what I take from what I've read.

Don't give up yet. TDM1 has worked for lots of people, and I know a woman who had bone, lung and liver mets who was in hospice, started TDM1 and got to NED! Unfortunately, it did end up going to her brain but cyberknife controlled that and I think she's on her 12th year with mets now. She was in the early trials.

And, for the record, my mother died of liver disease - she had cirrhosis and it was like your doctor described. She went into a coma and never work up. I don't think she felt any pain, except that she got esophogeal varices at one point (which was how she was diagnosed), but she also had alcoholism and so her liver was just scarred rock. I don't think that is too common with cancer patients.

But I don't think we need to go there yet. Think positive, this drug will get you NED.

06-08-2013, 01:14 PM	#17
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: "Help Me" I have been on herceptin 4 years now - I can't say it doesn't work because you can't prove a negative. I have progressed and gone metastatic on it, but maybe if I didn't have it I'd be gone by now, so maybe it's slowing progression some. It isn't working perfectly but it might be helping, who knows? That's why my doctor keeps me on it. I saw my first shrinkage on gemzar and perjeta. Gemzar is very tough on my marrow and I can only get one infusion a month now as it takes that long for my blood to recover, but it seems to be holding steady at 3 cms, and I am in prep for SBRT. My understanding of why TDM1 works when herceptin may not is because it is herceptin along with a very powerful chemo drug. The drug, without the herceptin part, can't be given alone, it would be too toxic. But when mixed with this formulation of herceptin, it guides the chemo directly to the cancer cells and nowhere else. So it is not as hard as a regular chemo and it works better. That may be a layman's understanding, but that's what I take from what I've read. Don't give up yet. TDM1 has worked for lots of people, and I know a woman who had bone, lung and liver mets who was in hospice, started TDM1 and got to NED! Unfortunately, it did end up going to her brain but cyberknife controlled that and I think she's on her 12th year with mets now. She was in the early trials. And, for the record, my mother died of liver disease - she had cirrhosis and it was like your doctor described. She went into a coma and never work up. I don't think she felt any pain, except that she got esophogeal varices at one point (which was how she was diagnosed), but she also had alcoholism and so her liver was just scarred rock. I don't think that is too common with cancer patients. But I don't think we need to go there yet. Think positive, this drug will get you NED. __________________ 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.