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I am lost and scared that my next option is chemo. Emotional Yo-Yo and I have chemo PTSD

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Hi there i just need to vent my fears. Not even 2 years with MBC and i am about to quit all treatments. Emotional Yo-Yo takes tall. Back in 2016 chemos were rough but i was going for the win. But this time around is different. There is no end of treatment and there is no win per se. I am lost and scared that my next option is chemo. And I have chemo PTSD. What makes suffering more that target/endocrine therapy is no longer working. My MO and 2nd opinion MO somewhat agree that CHECK2 and newly found ESR1 fusion (liver biopcy) are causing resistance to treatment and likely Elacestrant is not a right drug and next options are from chemoland. Xeloda ( but with my genetics cocktail hared to say), after that, Carboplatin, Gemcitabine, Paclitaxel, may be may be Sactizumab or possibly try Trastuzumab or PARPs post chemos. I am so close to quit now, but want to hear how you navigated your MBC, how is it going, and what was manageble and not. How long you on chemo regimens and how is your lifestyle changed and how you adopted? I want to see my son's 30th bday in 4 years yet i am not sure if i am willing or have guts to go through chemos. Thank you all!!!

01/2016 - BC right breast ER+/PR-99%, Her2Neu - , CHECK-2 +

01/2016 - 01/2017 surgery, DDAC-T and radiation

12/2021 - BC left breast ILC ER-/PR-/HER2 equivocal, completed a bilat mastect

03/2022 - MBC mets to the spine, chest wall, and sternum (ER+/PR+/HER2 negative)

07/2022-09/2023: Ibrance + Faslodex

08/ 2022 Progressions/ bones. Tempus testing was negative for ESR1

10/2023-01/2024: Kisqali + Letrozole

12/2023 Progression internal mammary lymph node, sternum, and liver. NGS Caris testing was completed and revealed ESR1 RNA fusion, PD-L1-10

2/2024 - Elacestrant ( Orserdu) Was 2 months off meds

Comments

  • moderators
    moderators Posts: 8,196
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    Welcome, @natalka_poltavka! We're sorry for the reason you had to join us, but glad you did. This awesome community is here to listen and help you through this difficult time. MBC treatment can be an emotional rollercoaster, and it's completely understandable to feel overwhelmed and scared. We hope you get responses from other members here soon, as their experiences and insights may provide valuable perspectives and support. In the meantime, we wanted to let you know about our virtual community meetups, a safe space to connect with others who understand what you're going through. There are different groups for metastatic breast cancer members, so we hope you can explore and find a group that aligns with your needs and preferences.

    Hope this helps! Let us know if you have questions. We're all here for you!💙

    The Mods

  • cure-ious
    cure-ious Member Posts: 2,756
    edited March 5
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    Why is elascestrant not OK for ESR1?, that's the whole reason it got approved… CHK2 is an indicator for Olaparib, though not as strong a biomarker as BRCA or PALB1, so I don't get why chemo is indicated? Have you checked for Her2-low?

  • natalka_poltavka
    natalka_poltavka Member Posts: 5
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    @cure-ious you are correct Elacestrant designed for ESR1, however I have ESR1 FUSION. This is a mind bender I won't go in details. 2 weeks on Elacestrant and MO took me off it because it won't br effective for me. I am moving fast to chemoland and starting Xeloda today. :(...

    Also MO said she don't mind to put me on Olaparb but she found no trials ot publications that people w CHECK2 will benefit from PARP Inhibitors. She sad we may do it as a 2nd line or something. My HER2 is +1. Should I inquire her about Olaparb again? I am so lost and confused

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    natalka, I’m so sorry for what you’re going through. Xeloda is a tolerable treatment so it’d be great if it was effective for you. I’ve been on it for four years with manageable side effects. I had chemo in 2011 when I was first diagnosed with mbc. One thing that helped was being part of a thread on this forum with other women who started chemo the same month that I did. It provided support and insight, we helped each other get through it. Those monthly threads are started all the time, so you might keep that in mind if you decide to do chemo.

    I can understand your feeling overwhelmed. I’ve definitely felt like that at times. Antianxiety medicine helps me, so you may want to consider talking to your doctor about something similar. I also try to stay mindful, being more present and try not to project myself into the far off unknown future. It’s not always easy, but it can help some. I wish all the best to you.