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Old 07-05-2013, 08:21 PM   #29
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)

Hi there.

I don't normally do this, but I want to recommend my blog, http://www.butdoctorihatepink.com. If you go back to the first pages, I describe my entire experience from mastectomy through TCH (and more). She may be interested in reading the TCH sections - I started that chemo December 2009. I did the same initial treatment as your wife has been proposed, so she will get some insight as to what to expect from one woman's perspective.

I am a few years past TCH now but I didn't find it too difficult a regimen. I guess I should go back and read it to find out if I really felt that way at the time. I think TCH is standard of care so I'd stick with that, it really isn't that awful and HER2+ is sneaky, as I subsequently found out. (I am now metastatic).

I did not have a port and I'm glad I didn't. I have strong veins and it was easy to access me. I have since had a port placed and dislike it very much. I am glad I made the decision to do my first year without a port. Most people feel differently than I do but one thing is I am very thin and I think a port is a different experience when you are super skinny. It sticks out about 2 inches from my skin and snags on stuff and just gets in the way and hurts. I've had more toxic chemos since that made it a necessity so I had no choice.

That's a minor thing. The question about the surgery - make sure you research the odds of contralateral breast cancer. It's extremely rare and because of that, I did a unimastectomy. While cancer has appeared in other parts of me, it has not in my other breast. I would stay away from unnecessary surgery myself, but there is also a mental health aspect to it. Some people just feel mentally they need to remove even the smallest risk.

I don't know what is left on your wife so I am just going to tell you about me. I am also glad that I still have one breast as I have had nothing but back and shoulder problems since the mastectomy. I also have phantom itching in the mx side that has driven me crazy. I also am glad I have some feeling in one side as the mx side has been numb for four years. So leaving one breast has been a good decision although esthetically it is less pleasing.

I am just sharing my experiences and thoughts. Everybody will come to their own ideas and conclusions based on their own needs and the information they gather. There is no right or wrong answers, unfortunately, there are only shades of grey and you will do the thing that you find the best based on what you know.

It is good that she is early stage and I am sure that everything you do will be successful and she will stay that way.

Best of luck to you all.
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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.
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