TNBC -post treatment maint. plan Keytruda

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b00pster
b00pster Member Posts: 3
edited August 2021 in Triple-Negative Breast Cancer

Hi there,

I'm hoping to gather some info from others experience with this. I was diagnosed with TNBC last year, went through 8 rounds of chemo, then had double mastectomy, then 25 rounds of radiation. I had a complete response to chemo treatment, surgery went well they got it all out including 12 lymphnodes, radiation was just a safeguard to catch anything the PET scan didn't pick up, etc. All PET scans were clean, after chemo and after radiation.

Now dr. puts me on Keytruda and Xeloda maint. plan.....however the Keytruda caused me to develop severe hyperthyroidism....and now I have to take thyroid meds for the rest of my life.

I had to stop the keytruda while waiting to see thyroid dr. so I only had one dose of Keytruda so far.

So my oncologist wants to put me back on Keytruda....but I am extremely reluctant to go back on it because I'm concerned that the Keytruda will attack other glands (adrenal and pituitary) or organs, as it did my thyroid.

I meet with my oncologist later this week and am preparing to tell her no to the Keytruda.....but I'm trying to have a reality check and research....to see if others have had issues with Keytruda as a maint. plan drug (NOT to treat active BC- as I am currently cancer free at the moment).

I know that TNBC has a higher recurrence rate......but I am so concerned about additional side effects that could stay with me for the rest of my life, just like this hyperthyroidism. :(

Anyone else out there have this problem? I know everyone is different and react differently to treatments, etc.

Thanks for any input on this.

Christine

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  • NorCalS
    NorCalS Member Posts: 288
    edited August 2021

    Hi Boopster.

    I’m surprised your MO wants you on keytruda if you had a complete response. I was on Xeloda after chemo, surgery, and radiation because I did not get a PCR. I did not qualify for the Keytruda trial, so Xeloda for 6 months is what I did. I’m 2 years and 2 months from Dx, so crossing my fingers that Xeloda was good enough

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  • moth
    moth Member Posts: 4,800
    edited August 2021

    b00pster, I just want to put some numbers to the recurrence reality.

    The Keynote522 study which led to the rapid approval of Keytruda for early stage TN showed "The number of patients who experienced an EFS event was 123 (16%) and 93 (24%)"

    EFS is event free survival ie - 16% of people who took keytruda recurred. 24% of those who just had chemo recurred.

    I mean that's just shy of 1 in 4 :(

    I'm so sorry that your experience with pembro is so awful. BUT as a person who did recur (& whose treatments were before the options of xeloda and pembro were a thing outside of clinical trials) I would gladly take endocrine damage over metastatic recurrence. If your oncologist and endocrinologist think they can monitor/treat/manage the side effects, I'd strongly consider taking it.

    Here's the study if you want to read it https://www.nejm.org/doi/full/10.1056/NEJMoa191054...


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