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Looking for Her2 Positive survivor stories

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  • Srecliner
    Srecliner Member Posts: 3
    edited February 2021
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    I'm happy if my experience offers a bit of hope for you kickcancer2020. It won’t be too long before you’ll be outdoors with the warm breeze on your face. I hope the last few weeks have been tolerable for you. Take care

  • amontro
    amontro Member Posts: 185
    edited February 2021
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    I've posted on different threads about the switch from Herceptin to Kanjinti. I'had been on herceptin for 12 years with my stage 4, every three weeks. In Dec. 2020, my cancer nurse hooked up my bag and said, by the way this is not herceptin, it's kanjinti, they're the same. There was no explanation, no discussion with doctor. Before reading about kanjinti side effects, I began having symptoms that were pretty strong compared to herceptin after all these years. I have severe muscle and bone pain, diarrhea, nausea, swelling of mouth lining, and being uncomfortable all over all of the time.

    I will be seeing my onc next week to ask her if I can go back on herceptin. She is reluctant to have me switch any of my meds, and I hope my insurance isn't the cause.

    A few years ago, she wouldn't take me off zometa when I had severe mouth pain which eventually resulted in osteo necrosis. My jaw has been deteriorating due to the drug. She finally agreed that I go off zometa but it was too late; the damage had begun.

    Anyone else want to chime in about any of the above?


  • beachmomof5
    beachmomof5 Member Posts: 2
    edited March 2021
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    I just finished round 3 of tchp. not fun, but managing. The lack of energy and fluctuating emotions is the worst. Was inspiring to see someone finished and doing well. I look for stories like yours to bring me hope

  • mcbaker
    mcbaker Member Posts: 1,833
    edited March 2021
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    Welcome! We will be praying for you. It might be worthwhile to enter a signature, so we will know better what your concerns are. Remember that we have been through it, with many new words added to our vocabularies.

  • gamma2192
    gamma2192 Member Posts: 16
    edited March 2021
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    Newbie here, just dx'ed denovo stage IV with mets in liver and femur area. I am Her2+/ER-/PR-. I hope I can find courage and positive stories with folks managing stage IV with Herceptin and Perjeta. I just started chemo (THP) and will be on it for six cycles.


  • moderators
    moderators Posts: 8,290
    edited March 2021
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    Hi gamma2192, and we're really sorry you find yourself here. We suggest that you jump over to this forum (Stage IV/Metastatic Breast Cancer) and specifically to one of these threads: de novo Stage IV or How are people with liver mets doing? We're all here for you.

    Medicating

  • racheldog
    racheldog Member Posts: 209
    edited April 2021
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    I would love to hear positive stories of long term cancer free survival of the Her2+ group as well. I just went through 4 infusions of Kadcyla and had too many side effects to continue. I had lumpectomy with clear margins and no nodes but am now contemplating a bilateral mastectomy procedure since I have time to do that before radiation.

    I would love to hear some no recurrance stories!

  • Pipandor
    Pipandor Member Posts: 130
    edited April 2021
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    Hi Rachel dog. I'm five years out from lumpectomy, radiation, chemo (Taxol) and immunotherapy (Herceptin). With your profile, I'm wondering why you weren't offered Herceptin. I understand it's easier than Kadcycla. Also, I'm wondering why you are considering a double mastectomy, if you had a lumpectomy with clear margins and clear nodes. Can you say a bit more about that?



  • Kattis894
    Kattis894 Member Posts: 150
    edited April 2021
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    Just had my yearly check up. Nothing found. I like to comment on this thread because it gave me so much currage when I was in the mist of treatment. 5 years has passed.

  • helenlouise
    helenlouise Member Posts: 363
    edited April 2021
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    Congratulations on 5 years Kattis and thanks for sharing your good news.

  • dogmomrunner
    dogmomrunner Member Posts: 499
    edited April 2021
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    Congratulations Kattis! Thank you for coming back

  • oandtolivo
    oandtolivo Member Posts: 20
    edited April 2021
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    I'm one month out from my 10 years dx. So crazy how time flies. To say I'm grateful to be here is an understatement. I've lost so many amazing sisters along this path, but I'm so grateful I got to walk with them for a while. I haven't posted on here for a long time, but I know how important it is to see down this scary path we're all on. I will say I feel older and don't have the energy I once had. Chemo, rads, sx's and tamoxifen have taken their toll, but I've learned my limits. I enjoy life and don't stress over the small stuff. I was a 34 year old mom of 3 young boys ten years ago and today I'm a kick*ss mom of teen boys who actually like to hang out with me. For all of you in the weeds right now, there is a path here. You will never walk alone keep moving forward you'll be 10 years down the road before you know it. Enjoy each day and love even when it's hard. Hugs, love and best wishes. Stay strong ❤

  • handmaidofthelord
    handmaidofthelord Member Posts: 10
    edited April 2021
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    I just want to say thank you for coming back to tell us about your 10 years (congrats!). I'm a 35 year old mom of a 1.5 year old boy, and am a few months away from giving birth to my second child. I was diagnosed just in January of this year and am still at the start of the cancer journey. While I'm not as terrified as I was a month ago, I'm still plagued with sadness when the thought of leaving my babies early creeps into my thoughts. So I find hope in every long-term survivor story I can find.

    Unfortunately, my stage and diagnosis is more severe than yours, but I'm still hoping to fight and make it to at least 10 years, if not more. If I could just live to see my children through high school, no matter what I have to suffer to get there, I can go happy. Hoping that being Her2 positive will put things a little in my favor!

  • Pipandor
    Pipandor Member Posts: 130
    edited April 2021
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    Handmaid, when I was in treatment l met a young woman who had been receiving Herceptin for several years and was doing well. She had been diagnosed HER2 positive stage IV de novo with a liver met. You will find accounts on this forum of women who have been living with Herceptin for years.

    Also, as you may know, Herceptin is especially effective against hormone negative HER2 cancers. So you have good reasons for being hopeful. My thoughts are with you and your family.

  • handmaidofthelord
    handmaidofthelord Member Posts: 10
    edited April 2021
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    Thank you, Pipandor! That's very kind of you to say and I appreciate that story so much. I'll admit, I am putting a lot of my hope on Herceptin, since I have heard positive stories about its effectiveness. I'm extremely thankful that I got to be Her2 positive and am just praying my aggressive cancer responds well to treatments.

    The biggest glitch I am facing right now is that I can't get the Herceptin/Perjeta cocktail yet because of my pregnancy. The current plan is to keep going with chemo (AC for 4 cycles and then Taxol weekly for as many weeks as we can go close to my due date) until it's time to stop to give me enough time to recover for delivery. Meanwhile, my MO is going to keep an eye on the lesions on my liver. She said we will scan the liver again after I finish my AC treatments and adjust plans from there if needed. But I will only be 28 weeks along then! I am hoping I can continue to get treated up until my baby is 36/37 weeks. It's hard wanting to balance what's best for me and giving my baby the best chance at avoiding NICU and birth complications!

  • NoBananas
    NoBananas Member Posts: 25
    edited April 2021
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    Hello girlfriends! I had my first HER2+ cancer 18 years ago! Lots of people I know did, and we are all still alive! And this is BEFORE Herceptin or any other drugs came along. We have all put our cancers behind us now. And you won’t see these people on this site, as they no longer need it. That is, lol, until a new cancer comes along. I was diagnosed with a brand new HER2+ last month. Even though they call it a recurrence, it is in actual fact a brand new cancer. And, it came up on my old mastectomy. I also had a friend diagnosed years before me, and she was pregnant too. She had to wait weeks for treatment, until the baby was old enough to do a C Section on. Her daughter is now in her mid twenties. She went on to have another daughter. And she is still cancer free today, without Herceptin, or Arimidex. Arimidex was brand new when I went through cancer, I took it for a few years. Remember, there must be millions of survivors out there, after a few years you don’t even think about it anym

  • aram
    aram Member Posts: 320
    edited April 2021
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    NoBananas, thank you for your encouraging story and I am sorry for your new diagnosis. I hope we all get to tell others the same story years from now

  • olma61
    olma61 Member Posts: 1,026
    edited April 2021
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    Response to the pre-surgery drugs given to HER2+ early stage women isso strong, that researchers are beginning to investigate whether some women will be able to forego surgery entirely, if they have complete response after neoadjuvant treatment.

    https://ascopost.com/issues/august-25-2019/can-some-women-with-her2-positive-breast-cancer-forgo-surgery/


    I realize not everyone would want to , even if this becomes an option, but it does show how effective the treatment is for HER2 positive breast cancer at this point.

    As for me, I am 3 years 8 months in from my Stage IV diagnosis with moderatelywidespread bone Mets and I am NED on scans for two years. Feeling pretty hopeful for the future. 👍🏼

  • NoBananas
    NoBananas Member Posts: 25
    edited April 2021
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    Thank you Aram, I am sure you will! I was 42 with my first dx. My sister was 32, with her first dx, then 44 with her second dx. Because she had a 6cm tumour entangled in her nerve bundle, she couldn’t have surgery. She had radiotherapy and chemotherapy. She is now 59 and has been living cancer free for 15 yrs. There are a lot of new therapies on the list now...but most of them are old, and were used way back in the days we had chemo.

  • NoBananas
    NoBananas Member Posts: 25
    edited April 2021
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    Olma, such an inspiring story! What treatment are you on right now? That gives so much hope to so many people! x

  • olma61
    olma61 Member Posts: 1,026
    edited April 2021
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    Thank you, NoBananas. I started with six months of weekly Taxol plus H&P. After that, continued H&P plus arimidex. Also had rads to onespine met in May 2019 which put me back to NED status



  • mcbaker
    mcbaker Member Posts: 1,833
    edited April 2021
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    Tickles my toes that people with really serious first occurrences are healthy after so many years. Gives me hope if I get it again.

  • mizmarie
    mizmarie Member Posts: 137
    edited April 2021
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    Hello HER2 Sisters!

    I was diagnosed ER/PR-HER2+ in Aug 2011 - I'm approaching my 10-year cancerversary! I did 6 rounds of Taxotere/Carboplatin, plus a year of Herceptin, then surgery, then radiation. Had tons of trouble with hemoglobin levels, multiple blood transfusions, and just as I was finishing up chemo, I was diagnosed with colon cancer. Had surgery to deal with that, then kept on trucking with Herceptin. Last treatment was August 2012, and after 7 years of follow-up visits, my oncologist discharged me from his care (he would have cut me loose at 5 years but I requested to stay on a bit longer). I am back to yearly screening mammograms, regular annual physicals, and I no longer panic when I feel a new ache or pain. It is true that you don't see many posts about long-term survivors, because after awhile, we just move on, no longer needing the comfort and support found here. But... I, too craved these kinds of posts, as they gave me hope during a time when I feared that I would not have a future, and lived my life only in three-week increments. So.... Keep doing what you have to get through each day, and one day years from now as you're thinking about your journey, come back and share your story. Cheers!

  • NoBananas
    NoBananas Member Posts: 25
    edited April 2021
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    • Hello MizMarie, always lovely to hear from long time survivors! I'm hoping to report back here again in another 10 yrs too. I haveapptments tomorrow with RO and MO to discuss my treatment. It's a case of deja vu. Here I go again after 18 yrs. This time around, I'm not as nervous. Hope your good health continues on. And thank you for dropping in!
  • margun
    margun Member Posts: 385
    edited April 2021
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    nobananas and MizMarie. Thank you for your encouraging posts.

    No bananas. I hope you bit this thing one more time and post again after an other 18-20 years. What is amazing in your case you’re survived 18 without any issues without Herceptin while I read in posts that her2 positive without Herceptin was death sentence. So, perhaps that was not entirely true. Also I understood you took Al only a few years only. I do not know why you stopped but that did not affect your case.

    Your friend that survived more than 25 years and still is cancer free, she also was her2 positive,

    , I hope you bit this again. Wishing you all the best

  • NoBananas
    NoBananas Member Posts: 25
    edited April 2021
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    Thank you Margun! Way back then, my stats were still really high, 87% chance of survival without chemo, and 92% with chemo, and that was for stage 2. I don’t think Arimidex was fully explained to me, but I do remember asking what extra percentage of survival would it give me, and they said 1%. I’m not a pill popper, so I seriously thought that wasn’t worth it for the side effects, which were giving me sore heels.

  • mistyeyes
    mistyeyes Member Posts: 573
    edited April 2021
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    I thank all of you who posts on here.

  • Spalta
    Spalta Member Posts: 3
    edited April 2021
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    this is inspiring. My mom was diagnosed last year with Her2 positive, trying to keep strong for her and our family thank you for sharing

  • Spalta
    Spalta Member Posts: 3
    edited April 2021
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    Hi Rachel nice to see someone else also receiving KAdcyla for early HEr2 BC, as so is my mom right now, I see its a fairly new thing, can't wait to share a ten year story! 🙂

  • racheldog
    racheldog Member Posts: 209
    edited May 2021
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    Pipandor and all who have posted, thank you. I had not been back on this HER2+ thread for a while. It is good to hear success stories. Yes, I think that most people who are doing well have moved on with their lives and probably do not come back to post unless something happens. So we do not always hear the "good" stories here. Four months ago I felt healthy and was working as a healthcare provider and doing a madman schedule. Then I was smacked with the diagnosis--good path report overall T1NOMO but the darn Her2+. Did Kadcyla and stopped after 4 infusions due to pulmonary pneumonitis. This was supposed to be an easy course going for great outcome. Never smoked or had any lung issues. I am older and now the plan changes to Herceptin, radiation and eventually AI drugs. At this time I am terrified of even starting Herceptin as that, too, has both lung or cardiac issues. I am not a wimp but the Kadcyla caused great sickness. I also am very, very skeptical of these aromatase inhibitors and the horrid side effects. I want quality for my life and not joint pain, bone loss, and everything else that those cause.