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Old 02-19-2022, 09:16 AM   #61
caya
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Location: Thornhill, Ontario Canada
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Re: How many years NED? Give others hope

15 years for me. Stage 1.
Cancer found while undergoing a breast reduction.
Clean mammogram and ultrasound 3 months before that surgery.
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 03-31-2022, 06:07 AM   #62
Melissa
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Posts: 116
Re: How many years NED? Give others hope

Hello everyone,

April 2022,
I'm a 16 year survivor! (two days)
I'm going to celebrate by working in my garden and then by having dinner with my family.
My daughters then: 9 year old is now in PA school, 6 yr old is now a senior in college and my 4 is now a sophomore in college. I'm immensely grateful for everyday and getting to see my girls grow and flourish.
I always think of the many courageous and caring supporters on this site, the survivors and the angels above!
Love to all of you!
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2022 - 16 year survivor!
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Old 03-31-2022, 02:59 PM   #63
Becky
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Location: Stockton, NJ
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Re: How many years NED? Give others hope

I am at 17.5 years. My school aged girls are grown and one is married. I am a grandma to a boy, Asher. I never thought I'd see this day. All I wanted was to live long enough for my girls to not be "messed up" from not having a mother. This site was my lifeline and helped me advocate for Herceptin of which I was not really eligible. I got it and maybe that's why I'm here. So grateful. Thank you Her2 friends
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-20-2023, 12:53 PM   #64
sherri
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Location: Vancouver, Canada
Posts: 329
Re: How many years NED? Give others hope

It was December 24, 2004, and I was 48 years old when I received the news that would change my life forever. I was diagnosed with inflammatory breast cancer, a rare and aggressive form of breast cancer that was difficult to diagnose. My diagnosis was ER- PR- and Her2+++, stage 3C. When I searched on Google, I found out that the survival rate was only 5% in 5 years. I wasn’t devastated, I thought I’ve been lucky all my life and had more share than a lot of people in this world, so if it’s my time to leave, I would accept it gracefully but I’ll try my best to survive and fight it.
Before my diagnosis, I was the picture of health, climbing mountains, running marathons, and running my own successful IT business. But now, everything was different. They started me on a very aggressive chemotherapy regimen, hoping that I would respond to the treatment. The chemo was intense, with three types of chemo drugs given together every other week - usually they give these drugs in a period of one year, one at the time. Despite the side effects, I tried to keep up with my active lifestyle and went hiking every week until I couldn't do it anymore.
After three months of chemotherapy, I had surgery (mastectomy) and then started radiation. The doctor advised against removing my lymph nodes because it would cause problems for me due to my active lifestyle. I trusted his advice, even though other oncologists advised otherwise.
But the battle was not over yet. Herceptin, a new drug in clinical trials, showed promise in treating Her2 positive breast cancer, but it was only given to those in stage 4. I knew about Herceptin because I was a member of this site and even met Christine, the founder of Her2 group and many other beautiful members of this site. I asked my oncologist to give me Herceptin, but he was hesitant, not knowing if it would work for me. However, after attending a cancer conference, he called me and urged me to try Herceptin. I agreed and began a year of injections every week.
After my treatment with Herceptin, I felt grateful for my recovery and wanted to contribute to the fight against cancer. I participated in Phase one of the University of Washington Vaccine Clinical Trial for Breast Cancer HER2 positive. Many people told me it’s risky to participate in phase one, especially now that I didn’t have any sign of disease, but I felt it is my turn to pay it forward!
I was lucky to have a loving family, husband, son, daughter, and an army of relatives and friends who supported me throughout my journey. Science and time were on my side, but I also knew that active participation was key to solving any obstacle in life.
Today, I have been cancer-free for 18 years, and I know that there is always hope. With the help of science, community, and family support, I was able to live longer and healthier. My journey taught me that no matter how difficult life may get, there is always hope and a reason to keep fighting.
This June I’ll participate in Cancer Vaccine Institute – UW Medicine. It’s free for everyone if you are interested. For full details, visit https://www.uwcvi.org/post/join-the-...rcle-this-june
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Old 11-20-2023, 04:18 PM   #65
Nurse4u2day
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Re: How many years NED? Give others hope

As of yesterday I hit 10 year mark since diagnosis and I remain NED
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 08-04-2024, 06:06 AM   #66
vickyjohn
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Location: SE England
Posts: 6
Re: How many years NED? Give others hope

Hello All,
I post for my wife Vicky - so just checking in to give others (much) hope
First diagnosed 2009 Her2+ Grade 3 Multi Focal LYMPH GLAND INVOLVEMENT. RADICAL LEFT MASTECTOMY
Fec first then Surgery Followed by Herceptin
Recurrence to liver, sternum, bones and internal mammary lymphs in 2011, 2013,15
Secondary treatments Taxotere, Capecitabine, liver resection and cyber-knife to sternum and internal, mammary.
Only Maintenance TDM1 3 weekly since 2019. No evidence of progression - stable healthy and well. Largely vegetarian / vegan now. Strong faith. Noted by Onc unit as a super-
responder
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Old 08-08-2024, 01:28 AM   #67
Nurse4u2day
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Location: California
Posts: 440
Re: How many years NED? Give others hope

10+ years Ned
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 08-12-2024, 09:05 PM   #68
margaret
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Re: How many years NED? Give others hope

Update 💕❣️💕
I wanted to add my positive story.
It?s been almost 23years NED !!!!

I feel great!
Take no medicines.
Grateful for every breath

I had stage 3b, 9cm, er/pr - and her2+++ ,16 pos. nodes in Nov. 2001 at age 38. My daughters were 8 and 10.
Mastectomy, 4 ac, 4 taxol plus herceptin and 1yr herceptin and radiation.
No reconstruction.

Blessings and prayers to all those going through treatment and still battling the disease. There is hope!!
Every new breath brings potential joy.
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