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Looking for Her2 Positive survivor stories

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  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2021
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    https://www.breastcancer.org/research-news/20111208b No reason to panic over Herceptin. The heart heals itself after Herceptin is done.

  • NWArtLady
    NWArtLady Member Posts: 239
    edited June 2021
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    I'm back!

    I recall a post around the time I was diagnosed wherein a person asked why there were no long term survivors in this forum and a wise person answered that it was because they were off living their lives. A few did respond and seeing those survivors gave me great hope for my own survival. I decided then to come back every year that I can and let y'all know that I'm still alive and kicking! It's now been *10* years, here's to (hopefully) many more!

    Hang in there, everyone. <3

  • aram
    aram Member Posts: 320
    edited June 2021
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    NWArtLady, congrats on 10 years! And thanks for your encouraging post

  • racheldog
    racheldog Member Posts: 209
    edited June 2021
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    Oh yes, thank you for the encouraging post.

  • dogmomrunner
    dogmomrunner Member Posts: 498
    edited June 2021
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    NWArtLady - Congratulations on the 10 years!

    I am now one year out from end of treatment. yay! Smile

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited June 2021
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    6 yrs out from all treatment except tamoxifin.

  • rebzamy
    rebzamy Member Posts: 49
    edited June 2021
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    14 years out this month, woo hoo!

    I always try to come back to post something positive.

  • mistyeyes
    mistyeyes Member Posts: 573
    edited June 2021
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    Thankyou for all the posts

  • angieb92
    angieb92 Member Posts: 291
    edited June 2021
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    I love seeing these survivors come back to reassure us that all is well!! I know in my darkest days, I hung on to those stories as a beacon of light

  • mcbaker
    mcbaker Member Posts: 1,833
    edited June 2021
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    I am embarrassed to report, because mine was just barely clinical. But 2 1/2 years post surgery. Rarely think about it anymore. I thought consciousness of the numbness in my breast would last forever. Even the numbness of my feet doesn't bother me any more.

  • dogmomrunner
    dogmomrunner Member Posts: 498
    edited June 2021
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    MCBaker - you went through more surgery than I did and more chemical treatment than others without HER+ so congrats to you. Your posts of encouragement and many others helped me get through my surgery and treatment. I haven't gotten to the point yet where the armpit numbness is not noticeable but at some point it will be almost (almost :) ) like it never happened.

    Congratulations to everyone here who has made it any number of weeks, months or years

  • lkc
    lkc Member Posts: 182
    edited June 2021
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    16 yrs out from a stage IIIc her2 pos bc alive , well and grateful everyday !

  • mcbaker
    mcbaker Member Posts: 1,833
    edited June 2021
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    IKC, you are genuine blessed!!

  • margun
    margun Member Posts: 385
    edited June 2021
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    IKC and all of you ladies who are coming back to give hope.

    IKC. I think you are the front runner on this site that made so long cancer free and going strong. I hope you and all of us live many many years healthy. Because of you I believe that I have a chance t see my kid graduate, get married and my grand kids.

  • melbo
    melbo Member Posts: 266
    edited June 2021
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    I am coming up on a year from diagnosis. I still have three more treatments of kanjinti and Perjeta. In the past year I have had a brain Mets scare (clean MRI) and a liver Mets scare (fatty liver probably caused by chemo). Since finding out about the fatty liver I have mostly stopped drinking (4-6 oz every two or three weeks) and I have cleaned up my diet, which has finally made me start feeling better.

    I started looking at statistics yesterday and realized everything is drastically in my favor. The recurrence rates for hormone negative, Her2 positive cancers treated with herceptin/kanjinti as well as perjeta both pre and post surgery, combined with a pCR at surgery is something like 6-8%. Those are pretty damned good odds.

    Now I just need to get used to the idea that this should just be a small chapter of my life and I should be able to start planning for the future again. Just typing those words kind of scares me though and makes me want to knock on wood and do any other good luck voodoo I can think of. I’m sure it will get easier as time goes on, especially once I’m completely done with treatment, but right now it still feels like a big, scary idea that I have to wrap my head around.

  • Pipandor
    Pipandor Member Posts: 130
    edited June 2021
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    Hello Melbo. I was hormone negative and strongly HER2 positive too . I also had a couple of scares during in the years following treatment and I still think of cancer when my bones or joints ache but I think of it less than I used to and luckily, most side effects of the treatment resolved in a couple of years. You have all the reasons to be optimistic. If you don't see many posts from HER2 hormone negatives it's just because they represent only 5% of breast cancers. All the best in your recovery.

  • Mommato3
    Mommato3 Member Posts: 468
    edited June 2021
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    April was 7 years for me

  • fluffqueen01
    fluffqueen01 Member Posts: 1,797
    edited June 2021
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    10 years post diagnosis, but 6 months short of ten years for what I consider the official date when they finally found the tumor on my third biopsy and temoved it with clean, but close margins. Had a bilateral mastectomy the month after that and there was no change.

    So while one shoe dropped, I am holding on to the other one for dear life! I still think about it every time the least little pain crops up, but I am out there living life and making as many memories with everyone as I can.


  • fairchild
    fairchild Member Posts: 138
    edited June 2021
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    Hey, I'm 3 years and 2 months post-diagnosis. There have been scary moments-- 3 work-ups the first year after treatment for cancer, but it always turned out to be nothing, thank God. I feel very fortunate indeed!

  • sandee107
    sandee107 Member Posts: 8
    edited June 2021
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    It was just 13 years for me last month!

  • racheldog
    racheldog Member Posts: 209
    edited June 2021
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    You are my poster child, Sandee. Thank you for still coming back to post 13 years later. Did you not have to go through Chemo for the Her2+? Or Herceptin? Or was Herceptin not there in 2008? Your tumor size and stage is similar to mine , yet I had Grade 3. They through everything at me even for this small tumor because of the Her2+, I am in radiation now and then 4 more infusions of herceptin, then done except for Letrozole. I think I dread the AI the most.

  • sandee107
    sandee107 Member Posts: 8
    edited June 2021
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    • Racheldog, I did not have chemo or herceptin. When they did my lumpectomy they did not find anymore cancer, only some slerosing adenosis which is benign. They sent it out for a second opinion to be sure. Since my cancer was so small and basically removed in the biopsy, chemo and herceptin was not recommended at that time. Maybe nowadays it would. I had radiation and was on letrozole for 5 years. The letrozole was not bad for me. I had a mammogram scare last year but it turned out to be nothing. I still worry that it will come back one day. As I get older, (I'm now 65) every ache or pain I think is cancer. I think it always stay with you, but I do feel blessed to have remained NED for 13 years.
  • mcbaker
    mcbaker Member Posts: 1,833
    edited June 2021
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    Sandee107, yes, mine was also very early. But hormone negative. I did get full treatment. So you may be right that very early HER2+ people get the full treatment now, when in the past they didn't.

  • racheldog
    racheldog Member Posts: 209
    edited June 2021
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    So many others here with great long term stories. It does make one wonder though that in the past there were much "lesser" treatments and the outcomes were still very good. Another breast cancer HER2+ friend and I had this very conversation tonight. Seems now that everything is thrown at very small or early stage tumors. Of course, that is putting women through a lot of drugs, side effects, discomfort and uprooting of one's life. Does make you wonder if more or less is better.

    But I am glad to hear on this forum so many very positive long term no recurrences. Gives us gals starting out a lot of hope. How great that you all came back to post. Now dealing with the "looking over one's shoulder" is going to be a challenge !

  • dogmomrunner
    dogmomrunner Member Posts: 498
    edited June 2021
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    I was also very early stage but my tumor was just under 1.5 so my MO went with just Herceptin. He said if it had been over 1.5 then he would have added Perjeta.

    Congrats Sandee on 13 years

  • melbo
    melbo Member Posts: 266
    edited June 2021
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    Racheldog — it’s an interesting question about less treatment, and there are already studies looking into it. The RESPECT trial found that there wasn’t a ton of difference in overall survival for women 70-80 if treated with just herceptin and not chemo + herceptin. I expect more older women with other health issues might go that route more often in the future. But there will also be a small cadre of women who wonder if they are being discriminated against and not being offered the “best” treatment because of their age. *shrug*

    https://www.breastcancer.org/research-news/can-older-women-w-early-her2-pos-bc-skip-chemo


    I expect that as more studies are done more women in younger age groups might choose the herceptin only choice if it is given to them. However, it will end up being a tough decision and I’m sure many doctors will push the chemo option because they know it works very well and the stakes are life and death. Plus, while chemo certainly does suck, it’s not nearly as bad as most people imagine it will be. (At least not most of the breast cancer chemo.)

    Even with all of the statistics in my favor based on the type of cancer I had and my PCR to chemo, I will likely visit these boards regularly for years just to keep an eye on new studies andbreakthroughs just in case I find myself back in cancer land.



  • racheldog
    racheldog Member Posts: 209
    edited July 2021
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    Oh Melbo, I hope you will not end up back in cancer land. My Kadcyla plan was only supposed to be a 6 month shorter protocol. Only made it 3 months. Went in with such a positive attitude and was knocked down with the early lung pneumonitis. I am a lifetime non-smoker, no asthma, not even any allergies and was totally healthy! Boy, did that T-DM1 take me down. And has spooked me for even doing Herceptin monotherapy after radiation is done. I guess that is what I mean about some of these "newer" drugs. Be informed about the horrible , potential side effects. I have now heard so many stories of women (years ago) who chose very minimal plans (lumpectomy or mastectomy) and never had recurrences. It does make me wonder if less is better. The long term side effects of all these current treatments is a big question mark, IMO. There seems to be a whole lot of articles now about de-escalation. I sure do like these HER2+ survivor stories , though. Thank you all for coming back and posting.

  • cowgirl13
    cowgirl13 Member Posts: 782
    edited July 2021
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    Twelve years out in June as I count my surgery date and not my diagnosis date. You know, all that is behind me now and I just don't think about a recurrence but then I'm 75 now and think that helps. Threw everything at it, although behing HER2 positive that's just what you do. Even before I know I had to do everything, I thought that I would because if I had a recurrence I wouldn't have been able to forget and blame myself for not doing it all. I'm glad I did.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited July 2021
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    I have mild CP. I have permanent nerve damage from severe sciatica. I wear a ankle-foot orthosis (brace) that I got before CA. Now I have yet more nerve damage from chemo. I agree, I would have made myself sick with regrets if I had had a re-occurrence, but all that for a few-- yes, a few percentage points?

  • Pipandor
    Pipandor Member Posts: 130
    edited July 2021
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    That has to be tough. MC your treatment profile says the tumour was over 6 cm, so maybe you made the right decision. Of course, no one ever knows for sure, but with a hormone negative, I accepted chemo as my only chance for systemic treatment. I hope that the side effects you are suffering will improve with time. Thank you for coming back to post.