Seeking Support: Triple Negative Breast Cancer Journey and Recent Setback

Hi Stacey. I have TNBC - diagnosed in 2018, local recurrence in 2021, lung met in 2022 and brain met in 2023. I’m back to no evidence of disease. There are treatment options for mTNBC so don’t lose hope! I’m happy to talk more if you need someone who’s been through it.

Denise - thank you so much for your encouraging message. It does help to hear positive news. I may reach out again once again after I speak with my oncologist tomorrow. 😀

Hi. Hope you were able to talk to your oncologist. 🤞

My wife got brca1 tnbc . The treatment is trodelvy

Hi Denise - I found out I’ll be on IV chemo for the rest of my life, however long that is. I’m only 57. I’m doing a liquid biopsy to find the molecular makeup to help aide in the treatment

Stacey, I’m sorry to hear that but don’t give up! Is your doctor helping you look into clinical trials? Let me know if you’d like to connect more on this app or offline. I’m only 48. We’re both too young for this.

Hi Stacey, I am 32 and I was diagnosed at 30, with TNBC in 3/2023. In 3/2024 I became stage 4 in my liver. I was put on Lynparza which didnt work then a chemo pill which also did nothing. 10/2024 brain mets and started IV chemo. I had gabbaknife to remove brain tumors last week and this week my liver scans came back showing a light decrease. So hoping this continues.. I’ll be on chemo for ever as well.

I have no affiliation with this program, but have been connected with Massive Bio which is a company that helps patients with cancer find clinical trials. Trials are definitely worth considering for metastatic TNBC. My nurse Ann has been wonderful.

Thank you Denise and Yvette. I haven’t talked to my doctor about clinical trials yet. I was on a research trial during my first diagnosis but I think I had the placebo. I’m doing my lab tests next week for molecular testing and getting my port implanted on the 27th. Then I will begin treatment. I have been getting Zometa infusions every three months to keep my bones strong. The next day is pretty bad. Lots of all over aches but when you are in these situations, it’s the least of your worries I guess. I still feel healthy and very strong and so far it hasn’t spread to any organs. So I’m trying to concentrate on that and just live every day trying to be positive.

Denise - thank you for mentioning Massive Bio. I’ll do some research 😀

This is such a difficult time, especially with scan results showing progression during the holiday season when connecting with your medical team feels harder. Triple negative breast cancer can indeed have more limited treatment options compared to other types, but research continues to advance with new therapies being developed. Many others in this community have experience with triple negative breast cancer and understand the unique challenges it brings - hopefully some will share their experiences and insights with you here.