Metastatic Breast Cancer: Really want and need to connect with others

Hello, I am sorry you are going through this. I hope you will find the best treatment options for you, that you will be able to do as well as many others have.

I was diagnosed with stage 4 breast cancer 3 years ago, mine is HR+ HER2-. It had already spread well into my bones but hasn't spread into any organs. They started me on treatment pretty quickly after my diagnosis in the hospital.
My treatment is CDK4 6 inhibitor Abemaciclib (Verzenio), aromatase inhibitor Exemestane (Aromasin), GnRH agonist Leuprolide Acetate (Lupron Depot), bisphosphonate Zoledronic Acid (Zometa) along with pain meds for both regular and nerve pain and calcium with vitamin d. I also take a few supplements to try and help with some of my side effects as well. Melatonin (for sleeping), Tart Cherry (for deeper sleep), Magnesium Glycinate (for anxiety).

I don't feel very well at all since on my treatments, I have a lot of side effects but many people don't have those. Unfortunately, I have to continue my treatments indefinitely, in order to control the spread of the cancer.

Hello: I am Stage 4 pleomorphic invasive lobular carcinoma, triple negative. HER2 low. Mets to contralateral (other) breast, lungs, retroperitoneum, lymphatic system with cutaneous metastases, which are about 30 nodules on my chest and abdomen, biopsy showed same ILC breast cancer.

Dx of Stage 4 in April 2024. Currently on sacituzumab govitecan "SG" (Trodelvy) infusions. After Dx of Stage 4, started on trastuzumab deruxtecan (Enhertu) but cancer advanced. After 3 months of T Dxd my oncologist switched me to SG. The SG is the only chemo that helped slow the cancer growth.

Original cancer dx was April 2022, stage 3B, despite regular mammos. ILC is often not visible on imaging including PET-CT using the standard FDG (glucose-based) tracer. Had usual neoadjuvant chemo, single mastectomy, 6.5 weeks of radiation. Then Capecitebine up until I was dx stage 4. All treatments were per standard NCCN and ASCO guidelines. However, all were worthless. Waste of time, money and energy. Cancer had already spread, invisible to imaging.

In August 2025 I participated in a clinical trial at UCLA and had a PET-CT using a FAPI tracer. The FAPI tracer "sticks" to the ILC cancer cells where the FDG does not. FAPI is used for other types of difficult-to-image cancers too, although not yet FDA approved. FAPI = Fibroblast Activation Protein Inhibitor. The FAPI PET-CT showed cancer that the standard FDG PET-CT had never revealed.

How do I feel? Tired, very fatigued. Can't live a normal life. Lung tumors inhibit breathing. Pain in lower abdomen, back and flanks. SG chemo causes anemia. Plus the usual unpleasant and gross chemo side effects.

ECOG status = 1.

If I knew at the beginning what I know now, I would have begged for SG as neoadjuvant chemo. The FDA has not approve SG for neo-adjuvant use yet. With SG, I might have had a chance.

Sorry that this is a bit of a downer message. But I hope that this info helps you or others. Let me know if I can provide any other info. Wishing you the best!

@olivia7850
Oh Olivia-
I feel the frustration and sadness that comes from not being able to access what is available.
It is exhausting to have to self educate and self advocate. God’s peace and mercy on you

@coco46
Hey- HER2+. HR-
Please share more details about sleep. I really do not want to take addictive sleeping pills! I do find I get a nice nap at the acupuncturist, and just had my first facial- fell asleep. Wish they could come tuck me in bed each night. LOL

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.

@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.

@sthrush

The longer you can stay in treatment the better. I don't think the medication I am on (Trodelvy) has been around more than 3 years. I really like it. I have had some side effects (loss of hair, diarrhea). Manageable. Glad you are able to have your son live with you. I imagine he feels comfortable with your help and guidance.

@coco46
Hey- HER2+. HR-
Please share more details about sleep. I really do not want to take addictive sleeping pills! I do find I get a nice nap at the acupuncturist, and just had my first facial- fell asleep. Wish they could come tuck me in bed each night. LOL

@wandering
Thank you! I plan to live a long time. I still work FT for several reasons (I am old enough to retire): I need the pay check, I have fantastic insurance, and most importantly it keeps my life normal and gives me a distraction.