DPD Genetic Condition

Hi Nicnak72 I’ve tagged a couple of people in but you could also try typing dpd deficiency in the search box at the top of the page to see previous posts?

 Susie64 and Anbou Can you offer any advice please?

Thanks

Karen x

Hi,

Yes, I am DPD deficient and because of that I had reduced chemotherapy. I was worried that the reduction would have an impact on my outcome, but my team reassured me that it would be ok. I had 5 weeks of CRT then 3 rounds of CAPOX. I started on 50% chemo and tolerated it really well, so it was increased. I can't remember how much it was increased by (I'll go through my notes and check), but I was then told that it would be the maximum dose for me because they couldn't risk going too high and having to stop the treatment. I had some side effects, but they were tolerable - I don't know if that was because of the reduced dosage???  Anyway, my last CRT treatment was on the 14th November 2023 - I can't believe it's been almost a year, and my last round of CAPOX was in January this year.  In March of this year, I received the news that we can all only hope, pray and wish for. I have had a complete response to treatment. I am very, very carefully monitored now, and have scans every three months. But, so far, so good. I am incredibly lucky and eternally grateful. Good luck to everyone going through their journey.  Keep strong and never give up hope.

Hugs xx

Thank you so, so much for this Susie. It is so reassuring and I am so encouraged and delighted by your brilliant news too. Thank you xxx

Stay strong and don't be afraid to share your concerns with your team and ask questions xx

Hi NICNAK 72,  Yes I was found to be DPD deficient. My Capox treatment  of 6 x 3 weeks cycles, consisted of 1st day infusion of Oxaliplatin at the treatment centre through a canula on the arm, then 2 weeks of Capecitabin tablets taken at home, then 1 lovely free week, and then onto the next cycle. Due to my DPD deficiency the Capox drugs were given at approx 30-50% over the 6 cycles. In my case, I developed acute neuropathy (a sensation of very cold feet and lower legs 24/7) at an early stage of treatment and it was deemed advisable  to further reduce the dosage and not to proceed with the last two cycles which would have been a total of 8 cycles. I had had major caecum colon cancer surgery in April 23 with lots of lymph nodes removed and several affected by the cancer. 

It appears that my much reduced dosage of the Capox drugs and the reduced number of treatment cycles were still effective. I was monitored by scans and bloods regularly. Keep a good chart record of dates, what, times drugs taken etc as this will make it much easier to check back and see your progress through. 

I would suggest that if you start experiencing neuropathy of cold feet/legs/other extremities, inform your treatment medical team without delay as this may require dosage reductions which may reduce the likelihood long-term acute neuropathy. It is a balancing act. In my case I am still suffering from constant coldish and lower legs neuropathy (sometimes the feet, especially the toes and soles feet cold and sore and hot at the same time ! However I have sort of got used to it and just carry on normally, including walking a lot. Warm soft socks and loose shoes seem to help.

Hope this helps and reassures you. All the best.

Anbou.

Thank you so much Anbou. This is extremely helpful and definitely reassuring. I am so grateful to you and Susie, for making me feel less alone on this strange journey xxxx

Nicnak xx

Thank you Karen ️️