Any stage IV surviving 5+ years ?
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PROTACs are a way to degrade specific proteins that drive cancer, one for ER is called ARV-471, which is in trials with everolimus or CDK4,6i, etc…
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I rejoined the forums yesterday after a liver biopsy. I was last here in early 2017. Hopefully I'll get some news at onc appt on Thurs. I'm a bit freaked out but appreciate the optimistic posts here.
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Hi everyone,
I wanted to say thank you for sharing your stories! They provide me with so much hope. I was diagnosed de novo ER- PR- HER2+ in August 2023 with mets to bone and liver. In March, three tiny brain mets were discovered that my team thinks were already there prior to treatment and only started growing once I was done with taxol (re: BBB) in December as I was NED in my body after 3 rounds of treatment in October. I have really struggled emotionally these past 8 months. Some days I have faith that I will live to see my kids become adults, but other days I really struggle to see how it could even be possible.
Reading these different long-term survival threads really pulls me out of my dark place and provides a lot of comfort but they can be challenging to find. I wonder if there would be a way to group them together or tag them so they all show up and are easier to find when you do a search?
Thinking of you all and hoping to follow in your footsteps!
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Stage IV since 2015. Just stopping by to add myself, still, as one of those who is 5+.
Done many treatments, but just started Enhertu this week. At 47, I am still working and doing my best to walk 4 miles a day.
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I just realized that I’ve hit the 13 year mark.
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Wow! Congratulations @exbrnxgrl and @mikainsb!
You give us hope!2 -
I’m at 11 in August, and I’m still here, even though they totally screwed up, missed my diagnosis for six years, and I had no medication during that time. I’m almost grateful for that, though, because if I had been diagnosed correctly in 2013, Ibrance wasn’t approved yet. If I hadn’t been on Letrozole for two years starting in 2019, I wouldn’t have had Orserdu the last nine months because it wasn’t approved until January of 2023.
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Hello All,
This thread is such a nugget of hope and strength - thank you all for sharing your stories, connecting, and offering a safe space.
I was a member in 2011 after dx of Stage 2b at the age of 32. It would take 11 blessed years (2022) before the disease came back in full force. Saving my life then gave us fertility problems that took away hope, efforts, money - among other things, from starting a family life.
Many years after, we were blessed with our miracle baby after a multitude of ivf attempts in 2022. And just like everything else - we were handed with one of the the greatest blessings in life (our baby) the same time plunged into one of the most heartbreaking challenges in this adventure we so-call being a human (discovery of metastasis).
I am a "return customer". Coming back here is a testimony of the power of this community, which provided me with refuge and support back when I was so very young and navigating treacherous terrains. I have made friends back then and had kept in touch with people I have connected with across the globe.
My prayer is that - the bravery and compassion in this community be continually propagated and never to meet cessation. May we all be blessed with the gift of longevity so that we may continue to benefit others, the world, and the future generation.
Wishing you all happiness, safety, and comfort.
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Vajra- Wow, what a stunning series of events and you seem to be taking it all in stride, so you are about 45 now, with a 2 year old?! Well as you see here, there are options that can keep one stable for years at a time, and, the longer you live the more options open up. It requires being vigilant with the scans and keeping up with the new drugs and tests, learning about the mutant genes and complicated pathways. A cure can't come soon enough!
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Seeq- You are four years out on endocrine therapy, how wonderful!!!
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Cure-ious - it is wonderful! When I hit the two year mark, I was a little worried things would change. Now, I'm just coasting along, hoping to stay under the radar, so to speak.
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I'm up for scans. I hate hate it very much. I just wanted to mention that to help cope with this blasted scanxiety, I came here and read through all of your lovely, real and hopeful stories. It's helping me, so thank you so so much 💕 for sharing!!
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I’m still on first line of treatment since de novo dx in Dec 2015. August scans still show that I’m stable. So very grateful
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This is simply amazing! Thank you so much for sharing, it is helping.
Here is hoping for many, many more years of NEAD/ stable!
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I figured I'd come back with an update. I had my 6 year cancerversary earlier this month. Dx'd de novo with liver mets in June of 2020, and still on my first line treatment (Verzenio/anastrozole). Woohoo!
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Wow, @seeq , thank you for coming back to share this update!
Congratulations on your 6-year cancerversary and on doing so well on your first line of treatment. Stories like yours bring hope and encouragement to so many people reading this thread.
We'd love to hear more updates from others as well. Keep them coming!
The Mods
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@seeq-Congrats!
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17 years for me!
Marie
Lost my signature so adding it here.
2009 DX E+P+ her2- Mastectomy left, chemo, rads, tamoxifen
Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuckRecurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR
Cryoablation 2025 right collar bone (no more radiation)
“Cyst” removal 2026 right collarbone ended up being more breast cancer
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex 2020 w/Arimidex
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@mkirkwood Thanks for posting Marie! That's amazing..
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Great to see updates from people doing so well. I am 10 years MBC Dx and 22 years BC Dx. I suspect my cancer had metastasised long before 2016. I did well on hormonals but I have now just completed first round of Capecitabine.
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Marie, Congratulations on dealing with mets since 2013, what an incredible, inspiring story!!!
Chico, Congratulations on 10 years batling MBC, since 2016, wow, amazing!!! Did you expect to go a decade w/ MBC?!
I am just one year ahead of you, diagnosed MBC June 2015 (original cancer 2003), so now at 11 years dealing w/mets (2 yrs w/liver mets).
Treatments: 1) Femara-Ibrance; 2) Faslodex-Ibrance; 3) Faslodex-Verzenio; 4) Elascestrant-SNV4818 PIK3CAi (a (16 mo clinical trial at MDA); and currently 5) Elascestrant-Verzenio.
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Lovely to be joined here by Cure-ious who I have followed and admired on her journey ahead of me. Also Chicagoan who I have also shared this journey with and of course the amazing Marie who makes so much seem possible.
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Hello Everyone!
Congrats to those celebrating milestone cancerversaries!
Welcome to all who have found this group. You are not alone!
I just had a follow up visit with my RO to discuss the “cyst” that was removed in April (clear margins?) and my most recent PET scan from July 10.
It turns out 2 small areas of concern my team was “watching” are now requiring treatment before they get too big and impact nerves and such. They are; 1 very small lymph node at the base of my collar bone (behind the area where the cyst was) and another small lymph node upper chest/shoulder above top pole both on the right sideGood news they are very small and far enough away from my mid chest/sternum area so very treatable with targeted radiation.
Looking forward to a CT, radiation mask fitting and 5 rounds of radiation incoming. Added bonus the radiation to collar lymph node should zap remaining cells from the “cyst” area - it’s a 2-fer!
I’ve been down this road before but I feel keeping a positive outlook really helps. No other choice! If I’ve got a plan I’m moving forward and not letting cancer stand in my way.
Hugs to everyone!!!
Marie
Lost my signature so adding it here. 2009 DX E+P+ her2- lymph nodes
Mastectomy left, chemo, rads, tamoxifen Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuck
Recurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR
Cryoablation 2025 right collar bone (no more radiation in mid sternum allowed)
“Cyst” removal April 2026 right collarbone ended up being more breast cancer
July 2026 Radiation incoming for 2 lymph nodes (right collarbone and upper chest/shoulder area)
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex since 2020 w/Arimidex
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Praising God. I've been stage IV for 5 1/2 years.
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