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My News
I'm sorry that I haven't been posting a lot. I've been busy, and filled with chemo-brain confusion. I will be speaking at SXSW 2015 on the topic of what we need to cure breast cancer, which is very exciting. We''ll be taking twitter discussion during the event so hopefully some of you can participate - I'll give you the info before I go.
But I'm writing to share my news with you.
I had a PET scan this month, and I am still NED.
Thanks to Perjeta, I've been NED for a year now.
I honestly believe I am never going to see breast cancer again. I know that isn't the way it works, but 2% of women get a cure even with mets. I feel like I'll be in that 2%.
I think it's Perjeta, it's a miracle drug.
I'm still in treatment and of course, nobody knows when or if I should stop, including my amazing oncologist. He did suggest I take a 2 month break and I'm thinking I will.
For those who don't know me, (and why would you), it has been a long road.
I was diagnosed in 2009, had the typical treatment of mastectomy and TCH, found mets in 2011, and have been through a lot. I have done 7 different chemos to date, 3 targeted therapies and an antihormonal. I had a liver resection where they removed half the liver, I had RFA on it and then I had SBRT. I went septic and nearly died, and I spent pretty much the past 4 years as a sick person. I was too sick to get more chemo so in desperation, my doctor decided to give me perjeta and herceptin without chemo, off-label and as a 7th line therapy!
It worked.
Now I am rejoining the world of the healthy. I've joined an exercise group with trainers who are certified in cancer patients, and while I am the weakest one there, (standing for a few minutes was difficult) I am determined to continue. I will workout 3 hours a week until the end of April and then I have the chance to train for a 5k if possible. I am not sure I'll be able to work again (and who will hire me) but maybe I can volunteer and become useful. I've spent a lot of time sleeping.
It is going to take some time to train my mind not to be a cancer patient anymore, and to think of myself as having a long life again. When I was sick with active cancer, I thought only days ahead and would plan nothing. I played the cancer card. When I heard NED for the first time, my perspective opened up and I started thinking months ahead. This Christmas, I even thought about what kind of tree I wanted next Christmas. I stopped mentioning cancer. Now that I have this news, I am thinking of my 60th birthday five years away, and weddings and grandchildren who are not planned and my son's graduation for Caltech in 3/12 years. The future has opened up to me again.
I am writing so I can give those of you newly diagnosed with mets some hope that it is possible. I'm the last person I thought would get this news. But here I am. Perjeta was not out when I started treatment, and it has saved me. There are new, promising treatments for all types of breast cancer now, including HER2+.
Even if it comes back in a year, I have this wonderful time. I want to do good in the world. Hopefully, my story can be a start.
*hugs*
__________________
 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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