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ER-, PR-, Her2+ Stage IV

Kikomoon
Kikomoon Member Posts: 358

Anyone else out there

Comments

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29

    meeeee. Her2 positive and stage 3.5 (stage 4) Mets to contralateral axillary lymph node

  • Kikomoon
    Kikomoon Member Posts: 358

    Hi Barb! Thanks for checking in. I didn't realize how few of us were on here until just recently and got curious. Including you and me, I count 5, maybe 6 of us posting regularly. I’m probably missing some though. Nice to meet you! Sorry we’re here.

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29

    yea it’s not a lot on here. But this is a small corner of the world. I’ve recently connected with a few others like us who aren’t on these boards. And it’s reassuring because they are 21 years and 3 years out so it’s encouraging. Nice to meet you. And yea not the best place but hey, gotta make the best of it. Smile

  • kris_2000
    kris_2000 Member Posts: 93

    Hi Barb and Kikimoon.

    Adding my name to the list. I'm glad you started this thread, kikomoon.

    I was hunting for others in the same position to maybe be able to compare notes on treatments as I go a little easier.


  • kris_2000
    kris_2000 Member Posts: 93

    Barb - are you still on your first line treatment? Did you start with taxol, herceptin, and perjeta?

  • margaritams
    margaritams Member Posts: 183

    Hi there Kiko, Barb and Kris. I’m raising my hand too! I regularly read and follow a few different threads including the Herceptin/Perjeta thread on which there are several regular contributors who are ER/PR- and HER2+. That said, since my cancer is also inflammatory, I have found very few with the same profile and even fewer (ie no one) on the same treatment as me - at least during the two years I was on a Keytruda + Herceptin combo. Hope we can keep this thread going.

  • kris_2000
    kris_2000 Member Posts: 93

    MargaritaMS - Thanks for joining us here.

    For those of you who had Paclitaxel, Herceptin, and Perjeta, I have some questions.

    1. How long were you on Paclitaxel before they took you off?

    2. How long was it before you had to start something new?

    3. What are you on now? and how does it seem to be doing for you?

    I've only been off Paclitaxel since late October after being on it for 6 months and haven't had another set of scans since then to see how I'm doing. I know it's different for everyone since our bodies react differently but I'm still interested in your situations.

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29

    hey guys. I’m currently on A/C for 4 doses. Then the plan is to go to Taxol for 12 weeks and add in Herceptin/Perjeta every 3. I just started on November 30th. My met is in my contralateral axillary lymph node. This all I know, hope this helps. I’m still very new to the disease and treatments.



  • olma61
    olma61 Member Posts: 1,016

    there aren't a lot of HER2 positive Stage IV people of either type on this forum

    I think it's because HER2+ is a minority to begin with and few early stage are progressing anymore since Herceptin

    I'm de novo triple positive and I did six months of Taxol also and did not start the hormone therapy til after the chemo was done

    The TH&P alone shrunk my breast tumor to nothing and got me to NED.

  • kris_2000
    kris_2000 Member Posts: 93

    Hi all, checking in to see how everyone is. I'm hoping we can keep this thread going so it's visible to anyone new that has the same diagnosis.

    We took our son to the airport today. I haven't been crying lately since my treatment is working and I feel well, but it hit me as we were driving away from the airport. I only see him when he gets leave a couple of times a year so who knows how many more times I'll get to enjoy seeing him. I hope he gets stationed closer to us soon. I'm thankful my daughter lives here.

  • Kikomoon
    Kikomoon Member Posts: 358

    hi Kris!

    I am still here. Feel like I sort of squandered the holiday week off, just been lying around,although I did go see some friends on Thursday and DH and I went out to eat a couple of times. The weather has been perfect for outdoor dining up until today. House is still a mess from the holidays. Back to work tomorrow but I may work from home for a week or two as Omicron shakes out.

    I’m glad your daughter lives near, I hope your son can be closer to you soon too. I don’t have kids but can imagine how hard it is. I’m glad I live 20 minutes from my own mom.

  • kris_2000
    kris_2000 Member Posts: 93

    Kikomoon- I'm glad you got to see some friends and went out a couple times with your husband. My holiday week sort of felt squandered too but I blame the cancer mostly now. When my son would visit we used to go skiing, climbing, whitewater rating, hiking, etc.. He loves being active. I miss having the strength and energy to do those things.

  • dawny
    dawny Member Posts: 588

    Hello

    I was diagnosed Stage lV er/pr-/HER2+ in May 2011, so coming up for 11 years!

    If you look in my signature line, you will see I had a triple negative lump a couple of years after diagnosis also. So I guess I'm not really sure what I am now! I am still on Herceptin though, as my only treatment at the moment.

    If anyone is interested to read more HER2 + stories, I'm a member over at her2support.org. There is a dedicated section there.


    Nice to “meet" you all xx

  • dawny
    dawny Member Posts: 588

    Oops, I need to update my history, sorry! Will get to that.

    I am NED, and on Herceptin only



  • ericalynn
    ericalynn Member Posts: 21

    I’m here! New to this diagnosis . DeNovo stage 4 to liver and chest nodes. Just started my maintenance of herceptin and perjeta. Here’s to us being the next group of outliers. 🙏

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170

    ericalynn,

    Welcome, and so sorry you needed to find us, but this is a great forum and you will find love and support here. You will find this group helpful if you haven't found it yet: How are people with liver mets doing?

    Wishing you the very best, ericalynn!

    Beesy


  • harrow
    harrow Member Posts: 38
    edited November 2023

    Adding myself to bump up this thread. I was recently diagnosed with Stage IV de novo HR-/HER2+ with suspected mets to bone and liver. I am on docetaxel, Herceptin and Perjeta. My recent PET scan showed a good response with no activity other than in the primary tumour, which has almost completely resolved.

    Once the docetaxel is done, I will just continue on with H&P indefinitely. I am hoping for a complete response, and to push for surgery and radiation (this is a bit controversial for Stage IV).

    Hopefully us HR-/HER2+ folks will see some of the longevity that others have on these anti-HER2+ meds.