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!1 -
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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