Phil, I have followed your story and it seems like your wife is one of the most hopeful stories out there. The "Assertive Cancer Patient" was on the trial too, and she had it in her bones, lungs and liver and it got her to NED. Unfortunately, it did spread to her brain and she's been dealing with that. But, she was weeks away from hospice when she got TDM1 and so got an extra couple of years for sure.
I also know that there are folks that it didn't work for at all. I am just hoping that for once, I am in the "works for" category. Even if I don't get NED, I just want stability and I would like to be able to function again. My poor son, I feel so bad for him. He's 16 and his mom has been sick since he was 12. He barely knows anything else. I want to do the college stuff for him at least. I think it would be better if I pass away when he's out of the house and starting a new life and TDM1 sounds like it can give me that chance.
No chemo has been difficult for me at all, except Gemzar. My theory is my liver is getting too damaged from the cancer to process it now. But no proof of that so far - maybe it was just something in the gemzar.
Anyway, I'm trying not to get my hopes up too high but I want them up a little. Currently, I'm feeling a bit discouraged. I know for a fact that I won't live a year the way I've been feeling and the pain I've been having, if something doesn't work.
__________________
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.
Hybrid Mode
