DPD deficiency and starting Chemo

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Hi all, I had a response from Mammabear, thank you Mammabear.

Looking for any further instances of people in my position.

6 weeks after sigmoid resection, stage 3 cancer removed but residual was found in 1 of the 4 nodes removed. I am DPD deficient so my first dose of chemo will be at 50% with xelox, then pils.

I was wondering if any other DPD deficient  people could share their experiences with me of cycle 1 and beyond.

many thanks

Tim

  • I’ve searched for dpd deficiency in the search box at the top of the screen and noticed that @SandaJH’s husband had a similar situation. Unfortunately tagging people no longer seems to work for me but you could try tagging her in yourself? 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  •   I notice that you mention DOD deficiency in another post. Are you able to offer Tim an insight! 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  •   Can you offer Tim any advice about how your hubby’s coped with it?

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Karen,

    my husband dealt  with it well, the only time he has problems was when he went on the chemo from radiotherapy. He was on 800mg of capacitabine, when he came off the radiotherapy his oncologist put him up to 1500 x2 daily. He ended up in hospital for 16 days with severe diarrhoea, bad stomach cramps, not eating, we got through it, that delayed his second lot of chemo then he was put on 1150 x daily. It took him a long time to get better but we had to make him eat otherwise he would have intravenous food. 

    he did end up in hospital again later on for a week.

    Avoid dairy at all times, my husband went on to  soya milk and vegan chocolate. - that’s really important from a diarrhoea point of view 

    He has recovered now and cancer free.

    I think make sure the oncologists know there stuff because not a lot of doctors know about this condition, our oncologist got advice from guys hospital when my husband became ill. 

    if you need anymore advice please contact me.

    best regards in your journey 

    Sandra 

  • Thank you everyone for taking the time to help me x

  • I am 50% DPD deficient which has required a significantly reduced dosage of the Capox drugs regime (Capecitabine tablets and Oxaliplatin infusion). This DPD ideficiency issue is important for chemo drugs dosages, depending apparently on the % of DPD deficiency. My main side effect problem has been a feeling of continuous cold feet and lower legs which may or may not be linked to drug dosages and my DPD deficiency. Otherwise feel mostly ok in my 5th cycle at reduced ddosages.. I am in my very late 70s and am fully mobile,  walking every day, often long walks. All the best.

    Anbou