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Sep 3, 2022 09:13AM
Good afternoon, all! Thanks so much for starting this thread. I was diagnosed with Stage 3b TNBC in Oct 21, have done 6 mos chemo and immunotherapy (A/C, taxol, carboplatin, keytruda), bilateral mastectomy with tissue expanders placed in May 22-- pathology indicated resolution of breast tumor but residual cancer in 2 of 7 nodes, 6 weeks radiation to chest wall and axilla, and about to start Xeloda and Keytruda on 9/15.
My MO did test for DPYD gene / DRD deficiency- and thank goodness, because I have the DPYD variant (score 1.0- meaning I am an "intermediate metabolizer" which is associated with severe side effects and even death-- 1 or 10 people with this genetic variant died on full dose Xeloda!!). I am going to start at 50% dose (2000mg) and be closely followed -- but I AM SCARED! In caps to highlight how I feel about it-- I'm actually pretty terrified. But I'm also terrified of doing nothing systemically given that there was *still* cancer in my lymph nodes after 6 mos of all that heavy duty chemo AND immunotherapy.
Does anyone else on this thread have the genetic variant/DRD deficiency? I read that 30% of people with this variant end up in the hospital at some point even if they do a dose-guided treatment (starting at 50% and adjusting up or down depending on response). I would love to connect with someone else in this situation, as it feels incredibly scary to walk into this knowing the risks.
I am grateful to those of you who started this thread, and have made note of all the things that seemed to help-- and welcome any other suggestions for how to reduce or manage SEs even if you don't have the DPYD variant.
And.... I would STRONGLY encourage anyone else about to start to GET THE DPYD test!!!!!!! The risks are real- and it is rare but if you have it, the consequences are truly potentially fatal.
Thanks, all-- so appreciate the breastcancer.org community and the support offered, it makes a hard journey a bit easier..
11/1/2021 Keytruda (pembrolizumab)
7/20/2022 Accelerated partial breast: Lymph nodes, Right breast, Chest wall
Lymph node removal (Right): Sentinel, Underarm/Axillary; Mastectomy (Left): Modified Radical; Mastectomy (Right): Modified Radical; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander