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Metastatic Breast Cancer: Really want and need to connect with others
Breast Cancer | Last Active: Mar 27 10:07am | Replies (34)Comment receiving replies
I have metastatic breast cancer which is considered to be Stage 4. I was diagnosed 12 years ago and have utilized many different treatments. I am currently on Trodelvy (infusion). Some of my blood work is troublesome so my oncologist is going to look at my labs tomorrow and decide what to do next. While MBC is not considered to be "curable" but based on my experience it is "livable". When my treatments stop working I get changed over to something so living as long as possible makes different treatments possible. I am quite happy with my life and hope I can keep this going.
Replies to "I have metastatic breast cancer which is considered to be Stage 4. I was diagnosed 12..."
@wandering
Thank you for your perseverance! I have HER2+ HR - bc brain metasis.
I am currently on the 3 drug treatment, Herceptin, Capecitabine and Tucatinib.
I have fought for lower doses and proton therapy to avid lymph nodes.
You see ok with waiting until progression before trying something new. That is where I am mentally hitting a wall. Help!
There are targeted chemo/HER2 meds but Dr.s do not want me to try them even thou today my cancer is very low in blood (Signatera). Makes sense to me to try and stamp it out like a weed and not wait for it to build up strength or mutate.
Have you tried any alternative complementa like IV C or major diet change.
P
@wandering
Congrats on 12 years! That is encouraging. I was diagnosed in Nov 2025 and am very worried and need to live as long as possible. I have a special needs adult son who does well in the environment I have created for him, but would do poorly in a group home. I need to be here for him as long as possible.
I start my 3rd cycle of Kisqali and fulfestrant soon, and so far side effects have been manageable so that's good.
@wandering
Trodelvy may be in my future as well as Truqab. What side effects did you experience?
I am thrilled to hear you were diagnosed 12 years ago! That gives me such hope and optimism. Thank you! When first diagnosed in August '25 I thought I had to plan my funeral.
Although I am Stage 4 with lung ( Pleural effusion ) and liver nodes, I am symptom free and am being closely followed with imaging every 3 months. I am on an androgen blocker experiment-the reasoning being my cancer has always been strongly AR+ even when it was estrogen receptor positive. Although the cancer has changed to TNBC, it remains strongly AR+.
I emphasize the joy in my life and remain optimistic. Your message has really helped. Much gratitude, thank you.
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@wandering thank you. Hope you continue to enjoy life very positive to hear people who are going through cancer and living with it. 🙏🏽🙏🏽🙏🏽