Kadcyla- what to expect

I was diagnosed Dec 2025 with HER2 triple positive. Stage 1b, grade 3, tumor 2.3mm, invasive ductal carcinoma. Finished 6 rounds chemo- HPTC every 21 days, tumor shrunk by 90%. Chemo was absolute hell for me. Had my first Herceptin 3 weeks after last chemo- tolerated will. I had lumpectomy 11 days ago- dr only removed the sentinel node, all margins and sentinel node clear!! had post op appt yesterday with surgeon and she asked how I felt being cancer free. Needless to say, I was on cloud 9.

I had appt with oncologist today and to get my second Herceptin infusion. However, the oncologist told me there was residual cancer within the tumor itself and I would stop Herceptin and start 14 treatments of chemo drug kadcyla. The surgeon never mentioned the residual cancer in the tumor biopsy to me - WTF!! I am scared to death of the side effects since I had a hellish time with HPTC treatments. I told the oncologist I would not begin kadcyla today as I need to process this and to please discuss with the surgeon as I would also be calling the surgeon on this. I AM AS MAD AS A PIT VIPER!

Can anyone with my same diagnosis please let me know what to expect with this stuff? And yes, I know everyone is different, but I want to hear about your experience and not just read the list of possible side effects. Thanks

Comments

  • kelbeljoy
    kelbeljoy Posts: 1

    I’m only on #3 and I’m assuming you are half way done now so I wouldn’t be much help since I’m still learning my effects but I wanted to at least tell you I am sorry you had to go through having a surprise like that after feeling you were done. I was warned it could happen ahead which helped and it’s still hard when you find out so I can’t imagine! I hope it’s going well!

  • glindagw
    glindagw Posts: 1

    Hi, I was stage lllA ER/PR negative HER 2 positive. I was too due 6 cycles of TPH chemo, unfortunately I was only able to do 3 cycles, treatment aborted due to toxicities. I did surgery(double mastectomy) . There was residual cancer found, so it recommended to do Kadcyla, for 14 cycles. I completed the 14 cycles. I have to say the Kadcyla was much easier for me to tolerate than the TPH chemo. I did sometimes feel tired and I did experience what I called cold flashes. Some cycles I did not experience anything unusual. When I finished I did notice some small red pin size spots on my skin, I was told this was not seen before with Kadcyla and to not be alarmed.

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  • moderators
    moderators Posts: 9,934

    Hi @glindagw and @kelbeljoy , welcome, and thank you both so much for taking the time to reply and share your experiences. Hearing from members at different points in treatment is incredibly valuable, and we really appreciate you being here and supporting one another.

    For more information on this medicine, here’s a helpful page from our main site: Kadcyla (T-DM1): What to Expect, Side Effects, and More

    We hope this helps!

    Best wishes,

    From the Mods

  • blubarie
    blubarie Posts: 1
    edited January 16

    Hi All,

    I was diagnosed in August 2025 with 2b HER2 and ER+ positive invasive ductal cancer. The tumor was 2.3 to 2.9 cm and 1 hot node. I had 12 weeks in a row of paclitaxel with tri-weekly Herceptin and Pejeta. Surgery showed the tumor had not shrunk but was 2.9 cm with clear margins. I had 11 nodes removed 3 of them were cancerous. Heading into Radiation this month AND Kadcyla with Herceptin.

    My Question: Did the Paclitaxel do anything? If not, why do we expect Kadcyla will?