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Long term survival Her2 pos stage 4

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Trischa
Trischa Member Posts: 6

Hi, I would like to hear from other long-term stage 4 survivors. Have any of you experienced ful remissions? What are your stories, what did you do personally to beat the odds?

Below I will share my story. I am happy to expand on the integrative care I was/am receiving that has played a huge role in my well-being and healing.

I was diagnosed with HER2 pos. breast cancer in 2012 on my 31st birthday when my son was just 1.5 y.o.& after chemo(which had side effects that lead to an artificial coma and a fasciectomy of the thigh amongst other things), radiation and mastectomy went into my first full remission.I was on 18 rounds of Herceptin faccompanying and following the chemo (forgot the first chemo drug, the one that almost killed me, but also brought the remission was taxol) I was then taking tamoxifen following the treatment. I was diagnosed again with a local recurrence in 2014. I got a remnant-free lumpectomy and since I was not given an oncologist here in Canada, my wonderfl surgent ordered the staging and my wonderful oncologists in Germany had a conference on my case and they consulted me free of charge. We decided to stop the Tamoxifen, as it was affecting my quality of life and apparently not effective. Staging was free NED..

After giving birth to my baby daughter in 2016, I was diagnosed with metastases in the liver which progressed to the bones. Thanks to my interdisciplinary team of different professionals (Ottawa Integrative Cancer Centre), friends& family, I was able to enjoy myself, stay fit and even travel during my 26 rounds of chemo - paclitaxel + trastuzumab + Pertuzumab (a polar opposite to what I had lived through in 2012)

From what we could see on my MRI of the liver, the tumors shrank rapidly in the liver and were soon no longer visible in the bones.Together with my doctors, we decided to stop the chemo and keep the remaining liver tumors small, stable and in check with just the immunotherapy (Trastuzumab&Pertuzumab)

From 2017 to the beginning of 2020, I was happily living my life with intermittant MRIs to make sure the liver stayed stable. I continued working with the OICC and other health practitioners and receiving the immuno therapy in the hospital every 3 weeks, and also continued with the small and bigger changes I had made in my life.

By the end of 2019, I was having increasingly worse headaches, until it got unbearable, (4 days before leaving for our big dream trip to Costa Rica in February 2020). Luckily my TCM practitioner saw me that day and sent me right to the ER, where they found tumors in my brain. We had a small initial shock, but all the news thereafter were great and giving us a lot of hope. (encapsulated, only 3, golfball sized, close to the skull)

I had my first awake-brain surgery on February 14th 2020, shortly followed by a second one.

My oncologist wanted a ct of Thorax abdomen. She saw what looked like lot's of tumors in my bones in an area not seen on my liver MRIs and thinking the disease was progressing to bones and brain tried to urge us to start a new chemo regime. Luckily we stayed calm, as we had a different hypothesis, that these were old lesion remainders from 2016,. So decided to wait another scan, to have an evidence based approach.. Lucky and blessed again, the lesions were not growing. I had check-up CT scans every 3 months to also confirm the liver tumors were not growing. Finally we switched back to MRI's of the liver area 2 days ago.

It was quite the feeling, and I am still processing, but the results read:

NO EVIDENCE OF METASTATIC DISEASE!!!!!!!!!

,,,still processing, but it feels like anormous weight of pressure, anger, stress ...has been lifted. A shadow I hadn't even fully realized was there

I am so grateful want to have so many people who helped me, first and foremost my husband who has carried me and our family through this big time. He was and is my rock. And also my interdisciplinary medical team, friends and family who gave me for Reiki, brought panels of wheatgrass, guided me to alternative(integrative )treatments, childcare, brought me weird fruit and vegetables that I heard about, organized a trampoline, meditated with me, sent positive thoughts and prayers my way, fundraised for my integrative treatments, illustrated my childrens's book about cancer (sequel to come...one day;-)), But most and foremost believed in me and were there for me, laughing and living through this with me.*

It takes a village and I couldn't have done it without them.

***

Comments

  • moderators
    moderators Posts: 8,174
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    Hi Trischa and welcome to our community. That is quite a history, and wow, amazing results. Are you getting your treatment in Canada or Germany, or both? What treatments, if any, are you on currently?

  • Trischa
    Trischa Member Posts: 6
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    Hi,

    I currently only receive treatment in Canada. I am continuing my conventional treatment of Trastuzumab/Pertuzumab every 3 weeks. Do you know of any research about people in my situation who had a delayed remission when just on Herceptin/Perjeeta?

    How are you doing ?

    Kindly,

    Trischa ***

  • jackboo09
    jackboo09 Member Posts: 780
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    Hello

    I was diagnosed with primary bc ( Her 2 positive) in 2011 at the age of 41. I had a lumpectomy, TCH and radiotherapy. I continued with Herceptin alone, having 18 H treatments in total. Started Tamoxifen and got on with my life.

    In 2017 I had a DVT and this led to discovering a small reoccurrence in a mediastinal lymph node. It was initially missed by the team dealing with the DVT, but eventually I was diagnosed with recurrent, metastatic bc.

    April 2017 started THP and managed 4 cycles. Wanted radiotherapy but not possible because of location. Ovarian suppression began in July 2017 with monthly Zoladex injections and Letrozole every day.

    March 2018- complete response in mediastinal disease.

    March 2020 switched to Herceptin only via injection due to Covid pandemic.

    May 2020 stopped Letrozole due to arthritis problems.,

    CT scans up to August 2020 still no progression.

    I’m now due my next scan ( March 2021) I will be 4 years post stage 4 then. I’m still as scared as ever. I’ve been left with arthritis in knees, feet and I think it’s in my shoulder and hip. This causes me pain but also increases my worries in case it is bone mets.

    I’ve been told that I have done very well and so far I am oligometastic. Just waiting to see what March brings now.

    Sending love to all out there and feeling so fortunate to have made it this far. I may walk down stairs like a 90 year old ( not like my true age of 50) but I’m still here and leading a good life. My daughter is 18 on Saturday and was only 8 when I was first told I had cancer.

  • olma61
    olma61 Member Posts: 1,025
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    I have read stories here and elsewhere of HER2+ metastatic wome who have maintained NED status for ten years or longer and have been able to go off Herceptin. This is my dream...may or may not be achievable for me but I keep in mind that ithas been possible for some. There are women from the original Herceptin trials in the 1990s who are still alive.

    Beyond that, there also stories of HER2 women, including those with brain Mets, who are long term survivors even with many setbacks and multiple lines of treatment, which is also very encouraging.

    I am not a “ long term “ survivor yet but am currently NED and have been responding well to treatment since I was diagnosed with bone mets Stage IV de novo in August 2017. I am more than halfway to a five year milestone and I feel pretty good, for which I am grateful.

    Hang in there and hope for the best

  • lilych
    lilych Member Posts: 176
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    Trischa,

    That is great news, congrats!

    Just out of curiosity, what is your original dx in 2012? staging info, tumor size, ki-67, node involvement or not?

    Thank you!

  • moth
    moth Member Posts: 3,293
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    Hi Trischa, welcome to the board. Glad you're doing so well! You asked about research - there are a number of studies looking at features of breast cancer and survival rates. HR+/her2+ consistently shows favourable outcomes. One study for example is this one https://bmccancer.biomedcentral.com/articles/10.11...

    See Figure 3. Looks like ~40% of HR+/her2+ with mets to multiple sites are alive at the 50 month mark. This is based on SEER data from 2010-2015. These would be pts likely undergoing standard NCCN guideline treatments.

    There is a Stage 4 NEAD thread which might be of interest to you. https://community.breastcancer.org/forum/8/topics/...

    Best wishes

  • Trischa
    Trischa Member Posts: 6
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    hi jackboo,

    I love your positive attitude and I am glad you are still here and enjoying life with everything that was thrown at you. Have you tried TCM or Reiki/craniosacral or other complimentary treatments to Western for your arthritis?

    We have an amazing integrative cancer center here with everything from high dose vitamin C IV, mistletoe etc, to TCM, naturopathic doctors etc. Maybe there’s something like that near you to help with the side effects of conventional treatments?

    Wishing you all the best **

  • Trischa
    Trischa Member Posts: 6
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    hi moth, thank you. I will look at it when I get a chance ***

  • Trischa
    Trischa Member Posts: 6
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    hi lilyCh,

    I honestly don’t remember much more than it was her2pos slightly hormonereceptorpos and they suspected lymph node involvement as they took out the sentinel plus a couple more, but when they checked it, it was free, which might have been due to the treatment being given before surgery...

    All the best **

  • Trischa
    Trischa Member Posts: 6
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    hi olma61

    That is amazing-congratulations on your ned 🥳

    Thank you for sharing **

  • elderberry
    elderberry Member Posts: 1,065
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    Trischa: Hi -- I just found this thread. Sometimes it is hard to be positive even when the news is good. There is that dark shadow always hovering close by. But along with fear there is also hope.

    Jackboo: I'll check your name to see if you posted about your March scan somewhere else.

    Hugs to everyone.