HER2 Support Group Forums - View Single Post - Definitive answer? When does the clock start ticking

CoolBreeze · 03-04-2011, 06:17 PM

I'm not interested in the word "survivor." I don't relate to it and I don't like it. I find it trite. I know lots of people like it and that's fine for them, I have no problems with people calling themselves that. I dislike it for me, same as that whole pink culture thing. It's not my style.

So, my question has to do with when the statistical risk of recurrence drops. From which incident do they count? As you can see in this thread (and I read the one on BCO too) everybody has a different answer. If there is no standard answer, then that five year statistic is inaccurate. Or, let me rephrase that. It's accurate only for the one study where it was introduced, and now everybody has picked up on the five year safety zone.

So, it is like the false "1 in 8" claim.

As for a book, that is a nice idea! A few people have asked me that but I don't know how I would lay it out. It seems so blogish to me. Would I have to go back and rewrite it like a memoir? That's a daunting thought.

There are so many breast cancer books out there too....I don't know. but, thank you!

Lani, somehow I skipped your post. That's what I wanted to know but do you have a citation or something for it?

03-04-2011, 06:17 PM	#30
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Definitive answer? When does the clock start ticking I'm not interested in the word "survivor." I don't relate to it and I don't like it. I find it trite. I know lots of people like it and that's fine for them, I have no problems with people calling themselves that. I dislike it for me, same as that whole pink culture thing. It's not my style. So, my question has to do with when the statistical risk of recurrence drops. From which incident do they count? As you can see in this thread (and I read the one on BCO too) everybody has a different answer. If there is no standard answer, then that five year statistic is inaccurate. Or, let me rephrase that. It's accurate only for the one study where it was introduced, and now everybody has picked up on the five year safety zone. So, it is like the false "1 in 8" claim. As for a book, that is a nice idea! A few people have asked me that but I don't know how I would lay it out. It seems so blogish to me. Would I have to go back and rewrite it like a memoir? That's a daunting thought. There are so many breast cancer books out there too....I don't know. but, thank you! Lani, somehow I skipped your post. That's what I wanted to know but do you have a citation or something for it? __________________ 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.