Our treatment histories
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
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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.
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Stage 0 9/2020
Stage 2B 1/2021 (two primaries four months a part/one each breast)
Arimidex/anastrozole from 2/2021 through 9/2023 - mild hair thinning was my only side effect
Stage IV 9/2023, liver, lungs, bone
Ibrance/Faslodex/Xgeva 9/2023 but dropped Ibrance 12/2023 due to continued severe neutropenia and abnormal LFTs
Verzenio/Faslodex/Xgeva 12/2023 to 7/2024 Nausea was severe (lost 20 lbs) until dose reduced 1/2024. Continued diarrhea unbearable. Fatigue and ongoing anemia but manageable. Other annoying side effects but manageable.
Verzenio no longer working so on to???????????????????????
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As you can see below, instead of using the awkward bco templates to list diagnoses/treatments, I put a chronological record in my signature. You can deduce the length of time I stayed on anything by observing when the next one started.
For side effects, use search & go to the particular drug thread. Scroll back to when I was on it. I most likely shared issues of concern there. Metastatic disease is not as simple or easy as early stage. The range of possibilities, including clinical trials, is daunting.
Rarely will 2 people have identical courses of therapy. There are way too many variables to make that a common finding. However, we can certainly learn from each other. The longer a person survives, the more complex their case often becomes.
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I'm a pretty recent diagnosis (most of my info is in my signature lines). I was diagnosed de novo stage IV IDC, age 51. I had some awfully bad luck. I had mammograms and ultrasound annually for three years before I noticed puckering around my nipple, went back for another mammogram, and ended up with a cancer diagnosis. Metastases are to my bones and liver.
I've been taking Kisqali, Letrozole, and get Zoledronic acid by i.v. every three months.
The kisqali ended up giving me some side effects, most were manageable, but due to low neutrophil levels I am reduced to 200mg per day. Not sure how well that's going, but I will have a scan coming up in August and will get results from the oncologist then.
I had radiation to my neck vertebrae due to a lesion near the top (5 doses) in March.
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Interesting post amd interesting stories, thank you everyone!
I had primary in 2018, er+ pr- her2-, no positive node, no treatments, just double mastectomy with no reconstruction.
In 2022 I had progression in most bones and liver, same type of primary.
3 broken vertebrae, couldn't move anymore, I never had so much pain!
Ribociclib +letrozole bring me NEAD in 12 months, I started to run and exercize again, progressively in this period. All liver mets were gone, all bones were hiled and mets wer not active. I couldn't believe it!
Unfortunately at 14 months progression in liver, switch to Capecitabine (apparently was a mistake of my oncologist).
After 8 months of it working really well, I had mixed progression, so I switched to eve+exe.
I'm now 2 months in to this combo, my markers and liver numbers are finally stable after 4 months they rised... I hope it will work for a while!
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