Fill Out Your Profile to share more about you. Learn more...

Looking for Her2 Positive survivor stories

Options
13132333537

Comments

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited November 2021
    Options

    i am coming up on my 10 year anniversary of my bilateral mastectomy. Triple positive. Had 6 Herceptin treatments with my other chemo, had a few setbacks, such as kidney failure. They had to cut my chemo by 25 -30%. When I asked if it would still work, he told me I had to be alive for ANY of it to work! LOL, its all in the perspective. LOL that was not a fun time. After my first Herception only treatment, I had to stop, because my EF went down below 40. Perjeta was not available back then. My onco did tell me that herceptin was most important with the chemo, and at the time that helped me not lose my mind. Ive been on Anastrozole for 9 years, going on 10. I got used to the side effects . at 5 years I asked to stay on it longer, then there were studies that 10 years was better. Not sure I want to quit, its kinda like my crutch! LOL. Its only been 3 years since I went to 1x a year to see my onco, because I had so much going on before that. So 10 years, even with not having the full yreatments. Hang in there! Hugs to all.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited November 2021
    Options

    You were truly blessed.

    I had a zoom visit with my oncologist yesterday. He has put me on a schedule of yearly visits already. We discussed my frustration with nerve damage in my feet, and should'a would'a could'a. He said that hormone negative breast cancer is very responsive to Taxol. But I had an episode of immune compromise, and one infusion was delayed by almost a week. At that point the Taxol could have been reduced and I wouldn't be dealing with as much nerve damage. He is comfortable with saying that because he is not the oncologist who brought me through the roughest part.

  • racheldog
    racheldog Member Posts: 209
    edited November 2021
    Options

    For all the triple positives: since we cannot do Oncotype screening for HER2+ is there anyone who has found (or told by onc) what are our real risks of recurrance ? I mean a calculator for % if we choose to not specifically do any endocrine therapy? Anyone found anything? Predict only shows mortality.

    This would be a question for the Triple Positive gals. I have done everything else but fighting going on AI drugs.

  • minustwo
    minustwo Member Posts: 13,200
    edited November 2021
    Options

    Rachael - worry, I'm ER/PR negative. But I did confirm with my new oncologist last month that it's likely after FIVE years and all the treatment that I went through, that I won't have a recurrence of the 'same' cancer. Not to say that I can't have a new breast - but that sure made me feel good. Maybe not really justified, but...

  • smoothoperator78
    smoothoperator78 Member Posts: 72
    edited November 2021
    Options

    racheldog- the Predict Calculator is very informative. https://breast.predict.nhs.uk/tool it is focused on overall survival, not recurrence

    when I went for a second opinion, I was told 30% chance of recurrence if I only did surgery and nothing else.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited November 2021
    Options

    The way my oncologist was talking, they have access to tables giving all that data. I have the same chances of getting breast cancer as any woman who has not had breast cancer. The only thing at that point that would reduce my chances of again being diagnosed with breast cancer would be to have lefty amputated. And my plastic surgeon probably has a story for the ages about a woman who asked, hypothetically speaking, if she were to have a grandchild who was in desperate need of her breast milk, would it be possible to re-lactate on that breast. (Answer, hypothetically, was yes.)

  • 1982m
    1982m Member Posts: 224
    edited November 2021
    Options

    Racheldog- have you asked about neratnib or on it? I am worried I won't be able to complete tamoxifen, although planning to give it my best shot. I thought tolerating a year of neratnib as a back up plan, especially since it's shown the best benefit with HR/Her2 it would be a good idea to at least discuss. My med onc said it may be over treatment, but I'm a bit if a complicated case due to age and other features (strong family history, young age, palb2 of unknown significance) and was open to it. He sounded positive about it.

    Perhaps that might be something to consider

  • racheldog
    racheldog Member Posts: 209
    edited November 2021
    Options

    1982M—that sounds a bit of overkill to me too plus I am in no hurry to take any more chemo or monoclonal antibodies. This whole year has been tough. I have another complication in that I need to have a knee replacement and I am hoping that can happen by February or March I do not want to be on either AI drugs or Tamoxifen and run the added risk of DVT. Or feel awful on these drugs while going through rehab. Or have more joint pain or ?

    I will be 6 months out from last treatment by then and will need to be cleared to proceed with surgery. I am taking the risk of not starting these endocrine drugs but want to end this knee pain issue which at this point is keeping me from moving forward with exercise or anything else. What a dilemma. Deep down I still think these endocrine drugs do such horrible things to the body. I wish there was a true risk recurrence calculator for HER2





  • smoothoperator78
    smoothoperator78 Member Posts: 72
    edited November 2021
    Options

    closest thing I could find regarding rate of recurrence: https://www.cancernetwork.com/view/what-risk-recurrence-her2-positive-breast-cancer

    For HR+/HER2+
    10 year RFS: 73.8%
    5 year hazard 10.9% with Herceptin

    Interesting hazard ratios for years 6-10 depending on node involvement


    original article: https://ascopubs.org/doi/full/10.1200/JCO.19.00443



  • racheldog
    racheldog Member Posts: 209
    edited November 2021
    Options

    Thank you, that is an encouraging article from 2019. I am hoping the experts start to look at this kind of data instead of giving these endocrine drugs out as protocol to everyone that has node negative, early stage disease. I see my NP today and will ask again about any recent calculators as well. As I predict, they will not really have any answers besides telling women to go on AI drugs or Tamoxifen.

  • raleighgirl
    raleighgirl Member Posts: 56
    edited December 2021
    Options

    Today marks seven years since since stage 3 Her2 + diagnosis for me! When diagnosed I had a 20 month old and seven month old. I worried I would never see them grow up. Now they are 7 and 8. After fearing that I may be unable to have more children because of the chemotherapy, I miraculously got pregnant and had another baby at age 41. She was born on Thanksgiving day in 2018. She is now three and a reminder that there literally can be life after cancer!
    I am healthy and doing well and I hope that cancer is permanently in my rear view mirror. My husband and I have dedicated our philanthropic efforts to raising money for the American Cancer Society and have so far raised over $100k. We are doing this for all of you ladies!! Sending hugs and love toall of those currently undergoing treatment.

  • aram
    aram Member Posts: 320
    edited December 2021
    Options

    raleighgirl, congrats on your 7 years and your new baby! Thanks for sharing with us :)

  • minustwo
    minustwo Member Posts: 13,200
    edited December 2021
    Options

    Great post releigh - thanks for updating everyone.

  • racheldog
    racheldog Member Posts: 209
    edited December 2021
    Options

    Raleighgirl, you give me hope. And others hope. Thank you for coming back on line to post. I had early stage but also the Grade 3, Her2+. It is hard to not think about this every day. I did everything in my plan this past year but not the AI drugs, yet.

    You give hope that 7-10 years is possible for Her2+ women.

  • margun
    margun Member Posts: 385
    edited December 2021
    Options

    Raleighgirl- congrats for 7 years and wishing you and everyone here many healthy years to come.

    Racheldog- I hope not only 7-10 are possible but even much more is possible.probably there are 20 or 30 year survivors we do not know off. II hope that still is possible to dye from being old. Am I too positive or unrealistic??

  • minustwo
    minustwo Member Posts: 13,200
    edited December 2021
    Options

    Yup - it's possible. Like Raleigh, I'm 7 years out from a recurrence that was HER2+. My blood work in August was good & I just had my every-other-year ultrasound. No evidence of disease.

  • aram
    aram Member Posts: 320
    edited December 2021
    Options

    MinusTwo, congrats on 7 years being NED and I hope for many many more years like that!

  • margun
    margun Member Posts: 385
    edited December 2021
    Options

    MinusTwo congrats for 7 years and I wish many more healthy years to come.

    Good health to all of us ladies

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29
    edited December 2021
    Options

    I pray to be able to post her on here in 10 years. I'm excited that the talk of restaging is being brought up again because I'll be considered 3C and not 4 if they do!

    Congratulations everyone!

  • raleighgirl
    raleighgirl Member Posts: 56
    edited December 2021
    Options

    Margun,


    I do think it's possible to now die of old age instead of the disease. I had a PCR after chemotherapy and had over ten tumors spanning 10cm. It was massive! Also had lymph node involvement. When I was diagnosed my oncologist told me that despite my staging and tumor size she thought I would be cured. I have chosen to believe her. Thinking otherwise takes away from my everyday joy. Sending positive thoughts and healing!!

  • Pipandor
    Pipandor Member Posts: 130
    edited December 2021
    Options

    I was diagnosed at the end of 2015 and my recent yearly MRI was good. My oncologist was keeping an eye on the fibroadenoma in my left breast but tells me our next appointment will be our last, although the yearly mammos will continue. A bit scary but a also a relief. I like to come back here to post the good news and it's great to see that many of the women here who underwent treatment around the same time are doing fine. Best wishes to all for 2022.

  • angieb92
    angieb92 Member Posts: 291
    edited January 2022
    Options

    I love hearing these 7+ year numbers! I was diagnosed triple positive in 2019. I believe have made great strides in bc treatment and that we will see bc patients dying of old age. I hope we make more majorly breakthroughs in treating our stage 4 brothers and sisters soon. My cousins just marked 10 years with stage 4 bc and is living life. I think it is so important that we hear of people doing well years and years after diagnosis

  • margun
    margun Member Posts: 385
    edited January 2022
    Options

    in July 2019 i had my last chemo. I am on Letrozole. My white and red cells were always low rang of normal. Today they come up lower than normal. White one 4 and red ones 3.88. I have some occasional lightheaded or dizzy situations so I do not know if it is the reason. I blamed letrozole but I do not know anymore. Do you have any explanation why my white and red cells are low than the normal considering that chimio was over 2 years ago.thank you

  • minustwo
    minustwo Member Posts: 13,200
    edited January 2022
    Options

    Margun - I'd go ahead & call your doc.

  • raleighgirl
    raleighgirl Member Posts: 56
    edited January 2022
    Options

    margun,


    My red blood cell numbers were not in the normal range until three years post chemo. But they did finally return to normal!

  • margun
    margun Member Posts: 385
    edited January 2022
    Options

    Raleighgirl- my red but also white cell count are slightly bellow normal. The white once were bothering me more because after the surgery they were in the normal range. However, I am also taking Letrozole which generated osteoporosis. It is possible that the Letrozole is doing this because apparently it is one of rare side effects of this drug.

    Hopefully, first, we stay cancer free and, second our body resist to all drugs necessary to fight the damn disease. Wishing beautiful and healthy days to all.

  • kimm992
    kimm992 Member Posts: 28
    edited January 2022
    Options

    My oncologist also confirmed that with my HR- and HER2+ status that my cancer will not recur after 5 years. He says statistically it just doesn't happen or is rare enough that they consider you cured after 5 years. He did say I could still get a new cancer though...but it eased my mind knowing that my recurrence risk now is almost nothing.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited January 2022
    Options

    Same for mine. I am actually on a six-month schedule for seeing MO. I can talk statistics, so chances of re-occurrence are way off into the good tail of the distribution.


  • margun
    margun Member Posts: 385
    edited January 2022
    Options

    so statistically speaking what is the chance of recurrence for triple positives?

  • mcbaker
    mcbaker Member Posts: 1,833
    edited January 2022
    Options

    You didn't get Herceptin?

    "At this time, there's been no specific research on survival rates for HER2-positive breast cancer alone. Current studies on breast cancer survival rates apply to all types." https://www.healthline.com/health/breast-cancer/he... So the tables were not specific to HER2+.

    "According to the National Cancer InstituteTrusted Source, these are the 5-year relative survival rates for women who received a breast cancer diagnosis between 2010 and 2016:

    • Localized: 98.9 percent
    • Regional: 85.7 percent
    • Distant (or metastatic): 28.1 percent
    • All stages combined: 90 percent

    It's important to remember that these are overall statistics. They can't determine your personal outcome."