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Old 10-15-2012, 08:31 PM   #1
Join Date: Dec 2010
Location: South Jersey USA
Posts: 10
Smile 11 Years bc, 10 Year with mets

When I was dxed at 29 on 10/23/2001 with stage III bc, I was devastated. No one in my family had cancer, I had no risk factors. I did a trial where 2/3 got Herceptin but I was in the 1/3 that did not just a/c and 12 weekly taxol.

In 10/2002, I found out after a hysterectomy that I had mets to my ovaries. My gyn gave me 24-26 months. I had a two year old. I was told I would never see him start kindergarten. I was very depressed. I worked in a hospital and all the cancer pts we saw were very sick or dying. My oncologist said, its b/c the ones doing well were just out there living their lives.

ON 10/23/2002 exactly one year from the day they told me I had breast cancer I started Herceptin. MY oncologist wasn't that hopeful b/c I had only been off tx for a month when I was dxed with mets. But Herceptin and Femara gave me years of NED and stability.

Things have been really hard the last few years but I am still here. Ten years later.

So I hope for anyone newly dxed, thinking like I did that it was an automatic death sentence, that people are out there living with this disease.

10/01 dx stage III breast CA,
10/01-8/02 mastectomy, chemo, XRT
10/02 total hysterectomy
10/02 dx with mets to ovaries
10/02-10/09 Herceptin, cancer NED or stable
11/09 dx mets for 3cm medisternal mass,
start Xeloda and Herceptin
07/10 dx with mets to adrenal gland and suspicious nodules in pleural stay on Xeloda and watch
11/10 more progression
12/10 start Abraxne Herceptin once week 3 weeks one week off.
10/6/11 PET showed adrenal is very active and new mets in internal mammary
11/1/11 Start tykerb and Aromasin
2/2012 endo dx stomachmets.
3/2012 randomized to non tdm1 arm of Teresa trial.
Started Gemzar
7/27/2012 progression but too small to switch
9/10/2012 now new lymphnode b/w stomach and liver off Gemzar Still no TDM1 crossover
10/3/2012. started perjeta, herceptin, taxotere
12/2012 losing weight from constant big D, scans are stable
1/3/2013 start TDM-1 xover for Teresa trial.
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Old 10-16-2012, 06:23 PM   #2
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Join Date: Oct 2011
Posts: 59
Re: 11 Years bc, 10 Year with mets

Shays mom,
What a wonderful post, thank u so much for sharing! I was diagnosed a year ago with mets from the get go, my second child was just three months old. I was so scared I wouldn't even live to see him turn one, but here I am a year later feeling better than I have in years! I know that this disease can turn on me at any time, but I have to live my life with hope that I will be around to raise my children. I choose to live my life with hope because the alternative is just too devastating.
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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Old 10-16-2012, 07:32 PM   #3
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Join Date: Mar 2011
Posts: 48
Re: 11 Years bc, 10 Year with mets


Thank you for the inspiring post. I was really scared when I was diagnosed. I had just turned 31 and had a 7 month old son. I had no family history of breast cancer so I really had nobody to help me through it all. This site and the many women like you that I have met along the way have really helped to keep me going. My son is now almost 3 years old and I have brought a program called Live, Laugh, Learn to my home town by an organization called Rethink Breast Cancer (Canadian Charity that helps women under 45 dealing with breast cancer). This program has really helped many young women to not feel so isolated. I wish you many, many, many more years!

All the best,
Dx Her2+, ER+, PR-, stage 2b/3 July 2010
Chemo Sept-Dec 2010
(Pertuzumab during last 3 rounds of chemo)
Surgery Jan 2011
25 Rads March 2011
Herceptin started during chemo and continued every 3 weeks for 1 year
Started Tamoxifen for 5 years

Looking for a vaccine trial
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Old 10-16-2012, 07:40 PM   #4
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Join Date: Sep 2012
Posts: 29
Re: 11 Years bc, 10 Year with mets

I was originally diagnosed with b/c in 2003. I found out it had metastized to my bones in 2008. Since then I have undergone different forms of therapy including Herceptin, Taxol, radiation. Herceptin held the mets at bay for three years and then stopped working. I am now on Xeloda and Tykerb and doing fine. When I was first diagnosed my kids were 2 and 4, today they are 12 and 14 and I am going strong. I don't think anyone should put a limit on someone's life. Everyone is different. I was told I had two years, it's been 10 and I expect to be around for 10 more. With today's treatment, metasized b/c is no longer a definite death sentence.
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Old 09-19-2014, 03:40 AM   #5
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Join Date: Jan 2011
Location: Bangkok, Thailand
Posts: 31
Re: 11 Years bc, 10 Year with mets

You ladies are giving me HOPE.

July 2010, I was dxed with stage 3 b/c. Been thru TCH, surgery, radiation, and a year Herceptin.
Jan 2014, it came back in my bladder and spreaded to liver and lung. I am fighting the same battle another time.
Have got 7 from 8 rounds of Taxotere and Tratuzumap (either Herceptin or Herculis because I am part of a reseach of Mylan company, anybody heard of the name?). And then Tratuzumap until progress decease.

Don't know what will happen next. Having read your stories is very supportive.
Even though treatment choices are not as many as in USA, there are still some ways out if the current one won't work. Thanks to technology.

The most important thing is to thank you Ladies, who've been through tough times and are still here sharing, posting, etc.
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
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Old 07-31-2016, 12:31 PM   #6
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Join Date: Jul 2016
Posts: 1
Re: 11 Years bc, 10 Year with mets

Love seeing your post year after year stable.
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Old 08-10-2016, 08:31 AM   #7
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Join Date: Aug 2016
Posts: 1
Re: 11 Years bc, 10 Year with mets

Your story sounds hauntingly like mine! I was diagnosed 3 months p/p too. Stage Iv De Novo (from the start). Are you still doing well on Herceptin? I had liver mets and 3 nodes, but all is completely gone after chemo. Please give me hope to see my baby girls grow up!
Dec 2015 Found lump in Left breast 3 months post baby
Dec 28, 15-Ultrasound and punch biopsy confirm stage IIB breast cancer IDC grade 3 Her2+ er/pr-
Jan 6 2016-Pet scan reveals Liver Mets 3cm
Port placed
Jan 22, 16 started chemo-6 months of Taxotere, Herceptin, Perjeta, Carboplatin.

March, 2016, liver mets are gone per CT scan prior to liver resection! Switched to abraxane due to taxotere allergy
April 2016, no sign of breast lump
June 3, 2016-3cm clot found in my heart next to the port catheter, heparin therapy started. Last Chemo!
Herceptin and Perjeta for life.
June 27,16 lumpectomy
August 2016-starting rads, eventually.
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