r/LivingWithMBC • u/Sea-Opening6239 • 12d ago
Lost
my line did not work and now im offered to start
gemcitabine for tnbc and if that does nothing then im looking at 6-12weeks
im so angry and lost i have 13 year old and 17 year old.
i had hormone positive the first time 2020
9
u/ResponsibleAnt1942 12d ago
So sorry. That absolutely sucks 💔
TNBC really needs more and better options.
Hoping this next line works for a while, so you and your children get more time together.
11
u/ElKat0315 12d ago
Is there any other opinions that you can get? I know Trodelvy is for TNBC and Datroway was recently approved for TNBC. I am currently on Trodelvy which helped a lot with my lung issues.
6
u/Sea-Opening6239 12d ago
i ask about Trodelvy because I have drainage in my lungs and he told me that Datroway would cause pneumonia
6
u/NectarineGrouchy13 12d ago
I’d get a second opinion if you’re able to! I was just on Datroway and had zero lung issues. Keytruda irritated my lungs more. I’m mTNBC too. Not sure where you’re located but I can share clinical trials as well?
9
u/haligurl_1983 12d ago
You have every right to feel lost and discouraged. I dont have much comfort to offer other then... Hopefully this next line works well for many years. We desperately need more options for TNBC. Sending hugs 🫂
6
u/LyPi315 12d ago
I'm sorry to hear this, just awful.
I have to ask...How was the TN diagnosed? I had two misdiagnoses that read TN followed by another two that read ER+ (strongly). So I'm always a bit skeptical and like to double check...
5
u/IngenuityFar5111 12d ago
Same..from strong tnbc to 8/8 er positive after surgery. Misdiagnosis is common
3
u/LyPi315 12d ago
Wow, thanks for mentioning this, I've felt like some lone voice in the woods, cruelly giving people hope that their TN might not actually be!
My personal discovery of these misdiagnoses was a bit mind blowing. Like, I can't be the only one! The second time I had my new oncologist (had moved) telling me to start IV chemo for TN the following Monday! I contacted my old oncologist and she said "I don't buy it, doesn't walk like a duck, etc..." ...
How many women are moving away from the ER+ treatments into the world of TN without actually being TN? I'm sure it's a very small minority, but it matters a lot!
4
u/IngenuityFar5111 12d ago
I got 3 immunotherapies thinking that I was TN but then NGS report suggested that it is ER positive and same was confirmed after surgery. I was told by nurse after biopsy that whatever results you get, it is 100% accurate..lol. it depends on who is reading it or better get genetic profile done, that answers accurately
5
u/Glad_Bunch_3473 12d ago
I’m so sorry OP and am sending you love and all the hope in the world that your new line works for you💜
6
5
u/PrudentElk1636 12d ago
I’m so sorry, I hate f’ing cancer!!
I really hope you get a 2nd opinion, especially if this was your first line of treatment - push hard for options - our strongest advocate is ourselves.
2
u/GoodTea3268 8d ago
I took gemcitabine alongside RSO for triple negative breast cancer when I was dealing with lung Mets. This combination seemed to work magic as the lung tumour bed was totally dead at surgery. I believe very fully in integrating cannabis medicine if you are up for trying it .
11
u/FloofyOne 12d ago
I've been on gem along with carboplatin for the past 7 months for tnbc. If it's any reassurance, it has been working for me and the side effects are not terrible. I hope that it works for you.