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Xeloda for early stage breast cancer

kater2021
kater2021 Member Posts: 9
edited September 2022 in Stage III Breast Cancer

Hi all! I'm writing to learn from others who may have had experience with Xeloda to treat early stage breast cancer! I'm starting a new thread because the only Xeloda thread I could find was, understandably, limited to folks with Stage 4 metastatic disease.

I was diagnosed with Stage 3b Triple Negative BC in Nov '21-- have completed 6 mos neoadjuvant chemo (A/C, Taxol, Carboplatin) and immunotherapy (Keytruda) - double mastectomy with ALND in May- and 5.5 weeks of radiation (finished today!!). Because they found that the cancer was still in my lymph nodes following neoadjuvant treatment and surgery (micromets) I am about to start a course of 6 mos course of Xeloda along with and another 6 mos of Keytruda.

If you have taken Xeloda to treat early stage breast cancer I would really be so interested in hearing your experiences- side effects etc.!

** I'm also especially interested in whether anyone in the community took Xeloda and was positive for the DPYD variant? IF YOU DON'T KNOW WHAT THE DPYD GENE IS AND YOU ARE GOING TO START XELODA-- ASK YOUR ONCOLOGIST TO TEST FOR THIS! I am what is called an "intermediate metabolizer"- which greatly increases risks for severe side effects including mortality. That is-- in the recent past, if someone like me got the full usual dose of Xeloda-, 1 in 10 *died* from toxicity. Fortunately, my oncologist ordered the genetic testing-- even though it is rare (<1% of population). This test is required in Europe and Canada, but only recommended in the US, so please do ask. If you test positive for the variant they recommend reducing your initial starting dose by 50% and monitoring carefully, but I understand that even in that situation about 30% of patients experienced severe side effects.

Understandably, I am pretty scared about starting, and would really love to hear from any of you who might be facing similar situations with regards to DPYD, but also just generally who have experience with Xeloda.

thanks, and best wishes to all

Comments

  • pesky904
    pesky904 Member Posts: 263
    edited August 2022

    Just found this thread. I did almost a year of Xeloda in 2018 and never heard of the DPYD gene. I was never tested for it. Interesting.

  • lw422
    lw422 Member Posts: 1,399
    edited August 2022

    You might find this thread of interest... https://community.breastcancer.org/forum/72/topics/881455?page=1

  • kater2021
    kater2021 Member Posts: 9
    edited September 2022

    thanks so much for this link, lw422!



  • kater2021
    kater2021 Member Posts: 9
    edited September 2022

    thanks, Pesky-- and I'm so glad you likely did not have the genetic variant! Most people do not-- but for the approx .5% that do-- I really wish they had a standard of requiring testing since the results of full dose are so catastrophic for us. Hope you are well-- you've been on this journey for a long while! appreciate your response!