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Our treatment histories

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Hello,

So far, I've been a silent member only, so this is my first post. I have been following many discussions regularly, and found this forum an incredibly helpful and encouraging place.

I was wondering if we could have a thread to collect our treatment histories? Which drugs we've been on, how long we've been on each, how we experienced the side effects, where we went from there and why? And of course which type of mBC we have, how long we're living with the disease, if there were specific mutations found at any stage, or any other details you find important.

I can go first :)

I've been diagnosed with mBC de Novo in July 2023. I had metastases in my spine, sternum, lungs and peritoneum at diagnosis. Until then, the disease was mostly symptomless and I was diagnosed after I looked for treatment for persistent bone pain in my lower back.

I have ER+ PR+ (95% and 50%) HER2 IHC 1 (low) mBC.

I am 61.

I had radiation to my spine and was started on ribociclib + letrozole. I've found the combination very tolerable, and recent scans have shown full resolution of all metastases except for the ones in my spine, which have been become partly sclerotic, and partly remain metabolically somewhat active, although not yet progressing.

I'm still only 1 year after diagnosis, so the road ahead is not yet clear. I have developed an ESR1 mutation according to a blood test, so my oncologist is thinking of having me switched from letrozole to fulvestrant or one of the newer SERDs, some of which are still in clinical trials. We haven't made any decisions yet, so I'm curious how others have been and which drugs they went to after first line treatment.

I think it would be great to have a place to collect this information, which hopefully can help all of us in identifying new drugs/combinations we could bring to our oncologists, and could also help newer members in getting a better idea of potential roads ahead. I hope we can spread hope, but also provide a glimpse of reality.

Hoping to hear from as many of you as possible and wishing all of you as many enjoyable and active days ahead as possible ☀️

AnnaK

Comments

  • anotherone
    anotherone Member Posts: 550
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    Good idea, Anna

    Signatures used to tell a lot but with a change in site ( I do not think it was for the best, we lost a lot of contributors and it seems to become clunkier - of course there is a reason for everything , it may be the result of it being free for us to use) even fewer people bother to do them/read them and understand them). Anyway even in the past you could not tell unless one specifically wanted to highlight something in that signature many of those things that you highlight.

    So, diagnosed at 2019 on 01/07 as a result of shortness of breath and tachycardia and persistent dry cough for about a month. Widespread pulmonary and chest metastasis, primary in 2006, the same pathology (Er/Pr -, Her2+) at the age of 46, very fit and well, child 15 y.o. partner with whom we decided to split 1 month before diagnosis,

    abraxane/pertuzumab/herceptine started 09/19. trial After seeing my histology and stats ( clepopatra trial I believe - median survival more than 4.5 years) we continued separation with an exporter I done that treatment for about 5 months, then continued with her/per only as per protocol. After about 80% of reduction in lesions there was slow progression on 2 consecutive scans (3 months apart) so I was changed to Kadcyla in 2020 as far as I remember.

    Went on Kadcyla for more than a year , stable/ish - 90% decrease in lesions by that time - disappointed a bit in it as was eyeing NED , numbness on fingers slowly increased which is a big Nono with my work - changed for a new all singing and dancing Enhertu in 11/21. Enhertu kicked my ass and delivered "disappointing" results on next scan - minimal decrease, stable. By that time I was in a new relationship, decided to stop treatment with 3 monthly scans. In July 2022 ( stable all the time scans) I was diagnosed with brain metastasis as a result of persistent headaches for about 9 days. Craniotomy in August 2022, second one in October 2022, SRS. 01/2023 - new lesions found on extra schedule MRI due to affected balance , suspicion of LMD. 01/12 - starting Xeloda/herceptine/tucatinib. 02/23 - SRS

    Limping with XHT ( either side effects or tired with taking many tablets/day or creatinine going up etc). In 10/23 got symptoms again that prompted urgent MRI with LMD diagnosis. SRS again, Enhertu since then, intratecal metotrexate since 01/24. Since 04/24 intratecal herceptine and Enhertu 80%. Slow but relentless progression. There is nothing else for me to try, when life is going to offer more downsides than benefits the intention is to stop treatment.