12 years mbc
on July 19, I celebrated making it to 12 years. I was diagnosed with 2 liver mets, er-, her2+. I have been Ned for over 11 years and off all meds for over 7 years.
When I was first diagnosed in 2010, I remembered reading that 2-3 % of stage 4 patients are “ cured” - ie- they get to Ned and remain there the rest of their lives. Just knowing that there were women who were living a normal lifespan gave me so much hope. My kids were 8,11 and 12 and I just wanted to be able to raise them. My kids are now 24,23 and 20 and my onc thinks I could be in that small percentage that are cured. I was seeing him every 6 months and now, he let me go to once a year.
I have seen that statistic is now 5-6 % and just wanted to give some hope to those who are newly diagnosed.
Comments
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Congratulations! I was originally diagnosed stage 2B in 2020 and diagnosed with recurrence in my collarbone and a lymph node in September 2019 and made it to NEAD July 2020. I’m curious, did your MO decide you could go off medication after 4 years or was that your decision alone. My MO says that I need to stay on medication because of the chance that cancer could come back without the medication
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I started having increasing side effects from herceptin, so I started spreading out doses. My neuropathy in my feet and legs were getting so bad, my dr recommended that I stop . The plan was when/ if the cancer came back, I would start on it again.
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Congratulations and thanks for posting! It does give me hope to hear from the "successful few" who can stop Herceptin, it is my dream although it is very scary to think about, too.
Wish you many more years of health : )
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Excellent! I’m so happy for you. I just hit eleven years earlier this month
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Lauriesh, what a wonderful update! I read your post very thoroughly. I can see how you would inspire those who are newly diagnosed, but you also very much inspire me, one who has been at this eleven years. It sounds amazing to read that you have been off treatment for seven years! My favorite part of your story is how you've been able to watch your kids grow! I'm so happy for you. Congratulations, and may you continue your relationship with NED for years to come!
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Lauriesh: keep on keeping on!!! You offer hope that some of us may be so lucky. No treatment for 7 years is beyond amazing. 5%-6% isn't brilliant but so much better than 2%-3%.
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I am late to this post Laurie. But, wow how inspiring as a newly diagnosed Her2 positive Mets to liver. I just started my maintenance last week and would love to pick your brain. I messaged you.
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lauriesh, thank you for posting and giving us hope. I’m happy to celebrate belatedly wit you!
My doctor thinks that I might be like you, and I’m praying he’s right about that. Since I’m oligometastatic, my MO only had me do Herceptin for 2 years, so I’m “on holiday” until they find another progression. I’m trying to make the most out of this time when I don’t have to do infusions.
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