Is this it or there is hope? Treatment resistant cancer and mutations CHECK2, ESR1 and more.

NatalkaPoltavka Member Posts: 1 *
edited April 1 in Breast Cancer #1

I am new here. Stage 4 MBC. HR+/ HER2-. Double mastectomy w reconstruction. Mutations CHECK2, ESR1 RNA fusion gene, PD-L1 =10, TP53. Mets in bones, liver, breast, lymph nodes. 11 month on Palbociclib + Fulvestrant and Zometa - progression, 5 month on Ribociclib + Letrozole - progression to liver, currently on Elacestrant. I am scared that I progressed so quict on target meds and getting into territory of chemos which I am dreading. Back in 2016 had Adriamyacin x4 and Taxol x21 and radiation. Cancer came back in 2022, double mastectomy and reconstruction just to find out few months after it's spread to bones. Recent progression to liver. Recent biopsy and NGS it showed some red flags - CHECK2, ESR1 RNA fusion, PD-L1 and TP53. Onco put me on Elacestrant. I understand Elacestrant and Fulvestrant are both (SERD). I failed Fulv+Palbo earlier and declined VICTORIA 1 trial as it was too risky to be in Fulvestrant only arm. Elacestrant (Orserdu) is designed for true ESR1 DNA mutation and I have ESR1 RNA fusion which there is no benefit data. The bigger overall question if I respond / benefit or even if we should continue w ET? Failing lines of endocrine therapies disqualify me for potential trials. With CHECK2 and ESR1 fusion and PD-L1, TP53 I feell like it's getting too convoluted and I ran out of options other then chemos. But the presence of TP53 according to few articles ive read predict poor response to platinum and taxsanes. However doctor think I might benefit from platinum carbiplatin + gemcitabine. The idea behind platinum is that my CHECK2 is in the same group with BRCA abd I might respond. What are the chances to try offlabel Olaparib? I m very discouraged and demoralized because I feel I m quickly running out of options. And I m scared of chemo. Onco told me with my diagnosis is 40% survival 5 years mark and 2 years are already behind it went quck between PET scans progression meds change and just running like headless chicken with no breaks. Thank you for your support.


  • claoh
    claoh Member Posts: 160 Member

    Hi Natalka. Every individual and cancer type are unique and there are no pat answers. When I was first diagnosed about a year ago I found peace to decline chemo and enjoy the time I had left. It was hard for the family at first, but they did eventually accept. Things changed when my cancer broke through the skin and grew outside my breast, which was supposed to be very rare. The only way to stop it was to accept the chemo route. The tumor became a greater evil than chemo.

    Again, my treatment will be different than yours, and I can't say you will have the same results. However, I've had 9 chemo sessions with 7 more to go. I must say it has gone more smoothly than I expected. The last four will be more taxing as I need a week between each session. Not looking forward to that.

    All I can say is you will have peace when you accept the right decision for you, whether it is chemo or not. I am not aware of anyone passing from chemo, even though it can be very rough and may have some lingering side affects. You are the only one who can decide the road you want to travel. Neither will be a walk in the park and all who walk this path have all been dealt an unfortunate hand. Either way, we need a positive attitude to make the most of our time.