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

Posted by hbbeckstead @hbbeckstead, Jan 10 6:39pm

I’m a breast cancer patient stage 4
MBC . I need to talk to those who are going through this or being through this. Need some informations on how they do with treatments or anything they did or doing that is helping them. Really need a group so l relate to with my issues please?
Thank you 🙏🏽

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olivia7850 | @olivia7850 | Mar 25 9:50am
In reply to @vissdoc "@olivia7850 This forum is so helpful to me. Recently joined as I felt so atypical. Your..." + (show)
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@olivia7850
This forum is so helpful to me. Recently joined as I felt so atypical. Your post made me feel so understood and not like an outlier.
Like you I was diagnosed April '22. Because of my daughter's wedding, it was approved to postpone workup.
Lumpectomy in June '22
Originally thought to be TNBC with oncotype 28, was started on chemo ( cyclophosphamide, 5FU. Methotrexate) followed by Taxol. ( dose dense because I just couldn't bare 12 more infusions). Mammo after chemo in December '22 was positive for the first time ever! [Diagnosis for this evasive lobular was originally found by routine ultrasound because dense breast tissue]. Proceeded to full mastectomy of right breast Jan '23. Then 30 sessions of radiation.
Tried anastrozole, Letrozole, Tamoxifen unable to tolerate. Never able to start CDK 4/6 inhibitors. Meanwhile had successful DIEP flap reconstruction.
Thought was "over the hump" in '25 August when contralateral lymph nodes found on routine exam. Now the whirlwind starts. Found at Mayo to have pleural effusion and liver nodes, stage 4.
Am currently feeling well and symptom free and on close monitoring. Truqap and /or Trodelvy may be on the horizon. My cancer is pleomorphic. Originally low ER then unstained slide showed ER+ , now I am TNBC. I have always been androgen receptor positive so am trying an AR blocker now with the hopes it will be as effective as ER blockers are for ER+ cancer.

Any advice welcomed. I understand your frustrating course and I wish you the very best. Thank you for your post

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@vissdoc
My gosh, visdoc, you have been through a lot! I'm glad you are feeling well and are symptom free.

A quick internet search indicates Mayo has FAPI PET-CT in clinical trials. However, you would need to check which cancers are covered in the clinical trials. I mention this as you indicated you had been to Mayo--they may be able to provide a better image of your cancer status via a FAPI PET-CT.

You also mentioned Trodelvy. I have been on Trodelvy (sacituzumab govitecan or "SG" for short) for 18 months and it worked well for a long time. It is no longer working--not unusual for a chemo/ADC (antibody drug conjugate) to stop working. No other chemos/ADCs are approved for my cancer which is ILC triple negative. For me, SG had so-called "manageable" side effects: fatigue, low red blood and white blood cells, anemia, alopecia, mouth sores/sensitivity, etc. You can read about the side effects and benefits in medical journal studies. SG is a choice to consider.

My oncologist is applying for compassionate use of datopotamab-deruxtecan (brand nane: Datroway; short name: dato-dxd.). Dato-dxd is FDA approved for some cancers but not yet for triple negative, although it is in stage 3 clinical trials for TNBC.

It sounds like you're doing well and I hope that path continues for you. Here's wishing you all the best!

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vissdoc | @vissdoc | Mar 25 10:31am

Hi there! Thanks for your response. I will reach out to Mayo re FAPI PET CT as I'm under close surveillance there. (Sounds like I'm a criminal lol).

I have heard of dato-dxd and hope you can get it. Stage 3 clinical trials is so close.

Where are you located if you don't mind my asking? I'm in NYC.

Im new to this forum but feel free to direct message me if that's even possible. Sending you light and blessings. Viv

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gailmarienewton | @gailmarienewton | Mar 26 7:23am

When does it stop hurting?

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vissdoc | @vissdoc | Mar 27 10:07am
In reply to @olivia7850 "Hello: I am Stage 4 pleomorphic invasive lobular carcinoma, triple negative. HER2 low. Mets to contralateral..." + (show)
Profile picture for olivia7850 @olivia7850

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!

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@olivia7850
Thanks to your suggestions, I have asked to be put on list at Mayo for FAPI PET CT!
Next will contact MD Anderson.
Sending hugs and appreciation for your knowledge & recommendations.
Hope you are feeling fine, viv

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