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33, TNBC, skin mets, and chest wall recurrence.

TNBCthriver Member Posts: 5

Hi All, not really a point to make but at 33 this is an isolated club to be a part of. Just want to share my experience, thoughts and treatment incase anyone is going through what I am.

I found a lump in 2020 at 31. Was told it was nothing. 6 months later I was diagnosed with stage 3, TNBC. I did 4 AC, 4 Taxol, 1 failed clinical trial, DMX (nipple sparing Diep flap), keytruda (immunotherapy), radiation and 8 rounds of Xeloda. Aggressive year long treatment and I really threw the kitchen sink at it.

After treatment, I took time off from work, traveled and when I returned, not even 6 months after my last xeloda pill. I found bumps on my radiated breast skin. pathology showed it was positive for TNBC and (her 2 low) and a CT showed chest wall spots. To say I was devastated would be an understatement.

Now I have began Trodelvy. 2 rounds in and the bumps have flattened. In my wildest hopes, dreams and wishes I will get a complete response and they can remove the breast and I will never have to think about this again.

I still have my hair and I hope I am lucky enough to keep it. Trodelvy has been fairly easy for me (compared to AC and Taxol). No hangover like feeling, no mouth sores, no extreme exhaustion, no nausea and 0 diarrhea. I hope this experience continues. I just have severe constipation the firs few days but I am learning to manage it with miralax and senna.

Anyways, that's my story. If you have any experience or advice, please share.


  • cookie54
    cookie54 Member Posts: 717

    HI tnbcthriver, Just wanted to say I'm sorry you are dealing with this again! I am a TNBC sister but I am also 56 so I can only imagine how difficult this is at your age. Interesting I was Stage 3C last summer and was finished Xeloda in July . Like you being off Xeloda I then had lung metastasis 3 months later. Now I am back on it with Keytruda also , so far it's holding me stable!

    Happy to hear it sounds like Trodelvy is doing it's job and you are doing well on it. Agree having your hair is a bonus as this time around I still have mine. I wish you continued luck with Trodelvy with complete response and hopes for surgery also. Best of luck to you, Hugs

  • serendipity09
    serendipity09 Member Posts: 769

    Hi tnbcthriver! I'm so sorry you are going through this and I hope and pray that the Trodelvy works for you and that everything comes out in your favor. {Hugs}

  • moderators
    moderators Posts: 8,178

    tnbcthriver - Sorry you are back here, and having to go through this again. Hopefully you will find support among others who have experienced similar experiences here.

    We're sending best wishes to you, hoping this new treatment continues to work well for you.


    The Mods