Looking for Her2 Positive survivor stories
Comments
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Thank you September. You sound put together in spite of the 2nd diagnosis. Wishing you the best as well. I also agree with not bothering with the negativity of people. Really does not matter in the end. Live the best while you can is becoming my motto as well. Love to hear that you have hit the 8 year mark with BC, not happy to hear about the lymphoma. All the best to you as you move forward.
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Mommaof4!
Congratulations and thank you for sharing! So happy for you and your family! I'm sure you are there anchor! I was diagnosed in October of 2014 and am doing just fine also! Some days I don't even think about it. I stay busy and live the best I can!
PMR53
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thank you all. I recently (4/13/16) finished herceptin and while I think I did great dealing with all the awful active treatment, I, too, am sucked into the horrible fear of metastasis pit. I am so glad I stumbled into this thread! I need to read this instead of the websites calling Her2 aggressive or high chance of recurrence. Thank you
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Hi there, I was wondering if we could talk?
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Hi MummyP, looks like you just joined this site so welcome. What do you want to talk about? People on this website are pretty good at responding to questions, and some have been around for a few months (or even years) so may be able to point you to the best part of the site. We've all been newbies once! Hope you're OK.
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Hi Mummy!
As MsBrompton pointed out, we're all here for you -- whatever you need! Feel free to post you questions, concerns, etc. and we'll all be here to support you. Tell us a little about yourself.
Welcome!
--The Mods
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This sounded like amazing news to me for those of us who are or were Her 2 Pos!
http://www.breastcancer.org/research-news/response-to-her2-therapies-seen-in-11-days
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Early days!
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I am 9 1/2 years NED after a diagnosis of Stage IV HER-2 positive with mets to liver and bones. It is possible.
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yeay Cnanthia!
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cnanthia Thank you so much for posting today!
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Awesome cnanthia! Thank you for sharing Any secrets to your success?
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I've posted here before, but every time I get another 6 month CLEAN checkup, I want to post to give encouragement. I am now FOUR AND ONE-HALF YEARS out from Stage 3 Triple Positive Diagnosis. Was only able to have Herceptin for 3 months because I had major valve damage that never reversed. That terrified me, of course, as I was hoping to restart Herceptin.
My MO sat me down, held my hand in a doctorly fashion and said: "I don't want you to worry one minute that you did not have enough Herceptin." Then he told me about the Finland clinical trial that said 3 months was as good as 12 months. I sure didn't believe him, but I have clung to his words over the last years.
And I got the all clear yesterday at my checkup and made my next appointment for my FIVE YEAR checkup in November!! I never thought I would be here, but I am and thriving!
My best to all of you!
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Wow Denise, how encouraging. Thanks so much for sharing. You give me hope. So happy for you. Love, Jean
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Thanks to all of the survivors that are commenting. I am 42 and I was diagnosed in May triple positive and just had a double mastectomy. Over the last month I feel like I keep getting kicked in the stomach with bad news. I have three young children and you all give me hope before I start on all my therapies.
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I was diagnosed in July 2014. Had a lumpectomy, chemo, an axillary lymph node removal then radiation. I had also a year of herceptin / perjeta every 3 weeks and finished last October. Not an easy journey and some scary moments. Happy to report my mamo last July was clear and saw my chemo doc a couple of weeks ago who said all is well and she'll see me in 6 months. God was with me every step of the way. I'm now recovering from a hip replacement in February, not related to treatment. Love, Jean
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Hi Everyone:
I have just been diagnosed with Stage 1, less then 2 cm but 3 small tumors, negative lymph nodes, ER & PR + with HER2 on one of the tumors. I appreciate all of your stories and wanted to ask if any of you are still experiencing any of the side effects from your treatment? If you did experience some effects afterwards, how long did they last? Also did any of you change your exercise lifestyle or diet? Trying to decide if a hybrid of conservative and alternative is an option. All responses would be most appreciated-
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HI Ibanks! Sorry to hear your recent diagnosis but Stage 1 is the best outlook of course. If one of the tumors is HER+ you'll be offered Herceptin and the chemo that goes with it. I had Herceptin plus Taxol, once a week for 12 weeks (there's a forum here called 'weekly Taxol' if you get that one) and herceptin every 3 weeks for a year. It really wasn't too bad (well, the chemo was no fun but the herceptin on its own is fine - I have been back at work and living a full-on life since the end of chemo, including sport).
Most importantly, HER+ used to be really bad news, but with herceptin it's no worse than any other kind of breast cancer. The drugs are no party, but the postings in this forum illustrate that long-term survival is what you can expect when you take it.
You can of course do complementary therapy as well - almost everyone in my buddy group did!
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I did herceptin and perjeta which is a newer drug for her2. They are getting great results by combining them. As you can see in my profile below, I also did standard chemo and radiation. The only lasting side defect is neuropathy on the soles of my feet from the taxol and stiffness in my left shoulder from lymph node removal and rads. Lots of good info here. Hope your treatment goes well.
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Thank you so much for your feedback!
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Really appreciate your feedback. It is very much appreciated.
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Thank you so much to all the women who have taken the time to post here. I have just finished 12 taxol/herceptin treatments, will be continuing with the herceptin until March 2017 and will soon start radiation therapy. I try not to worry about the future but it isn't easy. Your stories give me hope!
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I was diagnosed in March with mets to the lung and ribs. I just finished my year of herceptin in September, 2015 so it clearly didnt work for me. They started me on xeloda, herceptin and perjeta and I just had a ct scan which shows the cancer has progressed since March. Has anyone elsr been diagnosed her2+ and no response to herceptin? They are goimg to start abraxane next week but I'm worried that while they keep trying different treatments my tumor keeps growing. It now involves my entire right lung, several ribs and part of my diaphram. It is very painful and I'm having a hard time keeping my spirits up.
Thank you...
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themomoo a friend of mine diagnosed several months before me HER2+/hormone negative is currently NED. She had it in her liver, lungs and not sure where else… except over a year ago in her brain. She did cyber knife and is still NED and watching her children grow. It can take time to find what works for you.
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lago, what is cyber knife? Never heard of that. It just seems that every time I go it is more bad news. But it does help to read the stories on here.
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Ten months post UMX and still NED. Had my 6 month follow up with my Onc. back in March and my CEA and CA27-29 levels came back negative and slightly lower than they were a couple of weeks after the surgery. I received no chemo or rads. Stage 1A, grade 3, triple pos. DCIS with extensive 3mm IDC. No node involvement. Only symptoms have been surgery related with chest tenderness and one severe pain episode in my right arm about 4 months post surgery and transient numbness and tingling in right arm since.
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No replies on this topic? :-(
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There are many replies. Go back to page 8.
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Oh, good! I didn't realize that I'd been bumped to the empty final screen. Thanks!
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