HER2 Support Group Forums - View Single Post - T DM-1 Approved !!

CoolBreeze · 03-03-2013, 07:50 PM

Kristin,

Anecdotal, but I have a friend who was on TDM1 for two years (I think). She had mets in her lungs, bones and liver. All disappeared. Unfortunately, she had to discontinue the trial when it got into her brain. It does not protect the brain. She still only has it in her brain though. She's on ten years with mets.

Is Emelia the only trial on TDM1? I had thought there were several.

I am not sure I understand your question, Phil. Are you asking why it needs to be tested against a taxane when we already know what a taxane does? Don't you think we need to test these drugs against the gold standard, to understand if they work better? You can't take me and not give me a taxane and just assume I'll fail and put me on TDM1. Maybe I would have done well on the taxane. You have to compare with what you know is going to happen against what you don't know.

Why do they do smaller trials? It's probably easier to keep track of a thousand people than 40,000. Who knows what those 40k are doing? Plus, why make that much drug when it may not work?

Are you saying we shouldn't have trials? I, for one, even now, don't want to take a drug that has never been tested. I want the optimal chance that I will survive with minimal side effects.

I had a hard time understanding your post, but I'm on perjeta. Stage IV. So not sure what you mean there.

I read that one article that was skeptical but most oncologists and professionals seem to be excited about TDM1. I'm going to assume they know more than me.

I know better than to be very excited now anyway. I already had a liver resection that failed almost instantly. Taught me never to get really sure I may get a cure or long life again. But I do want TDM1 and my oncologist said he'd put me on it right away. After 7 chemos have failed me, this is the one I hope will do it, like my friend.

03-03-2013, 07:50 PM	#54
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: T DM-1 Approved !! Kristin, Anecdotal, but I have a friend who was on TDM1 for two years (I think). She had mets in her lungs, bones and liver. All disappeared. Unfortunately, she had to discontinue the trial when it got into her brain. It does not protect the brain. She still only has it in her brain though. She's on ten years with mets. Is Emelia the only trial on TDM1? I had thought there were several. I am not sure I understand your question, Phil. Are you asking why it needs to be tested against a taxane when we already know what a taxane does? Don't you think we need to test these drugs against the gold standard, to understand if they work better? You can't take me and not give me a taxane and just assume I'll fail and put me on TDM1. Maybe I would have done well on the taxane. You have to compare with what you know is going to happen against what you don't know. Why do they do smaller trials? It's probably easier to keep track of a thousand people than 40,000. Who knows what those 40k are doing? Plus, why make that much drug when it may not work? Are you saying we shouldn't have trials? I, for one, even now, don't want to take a drug that has never been tested. I want the optimal chance that I will survive with minimal side effects. I had a hard time understanding your post, but I'm on perjeta. Stage IV. So not sure what you mean there. I read that one article that was skeptical but most oncologists and professionals seem to be excited about TDM1. I'm going to assume they know more than me. I know better than to be very excited now anyway. I already had a liver resection that failed almost instantly. Taught me never to get really sure I may get a cure or long life again. But I do want TDM1 and my oncologist said he'd put me on it right away. After 7 chemos have failed me, this is the one I hope will do it, like my friend. __________________ 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.