DPD testing for 5-fluoruracil or capecitabine?

Hi Poppydays

Yes, I was tested for the deficiency before treatment could be started, and I think it’s fairly standard practice in the UK. 

Could you get back to your oncologist voicing your concern and request the test?

All the best to you,

Franco

Hi Poppydays2 

I was tested for DPD, like Franco said I think it's standard in the UK. My levels were low, so I was only given 50% dose of chemo for my first lot at the beginning but as my bloods showed I recovered well from that dose they put it up to 75% for my chemo at the end. If I remember rightly it's only about 8% of the population have issues with either low or non existent DPD. My oncologist did say it's relatively new to be tested and that a full dose of chemo would probably have killed me, but he had done his math based on my levels and calculated what chemo dose I could safely have. X

Hello Poppydays

Like the others I was tested very regularly so I would bring it up with your oncologist again.

Best of luck in getting tests done.

Irene xx

Hi Poppydays2 , I had my treatment almost 7 years ago & wasn’t aware of being tested for DPD deficiency although I had bloods done prior to starting treatment & once a week during treatment so I probably was.

Nicola 

I'm so glad you got tested! I don't understand why they don't test regularly in the US if 8% of the population has low or non-existent levels of DPD. 

I'm wondering if they tested seven years ago, since it sounds like testing is a newer thing. I am very glad that you came through with no problems from DPD deficiency!

Hi Franco,

I reached out to her. She has contacted my insurance company to see if they will cover it, but I am suspecting they won't since it's not required care in the US.

I'll keep you posted.

I’m really not sure Poppydays2 ,  I certainly don’t recall it being mentioned. On the plus side I had little to no side effects from the chemo side of my treatment so I presume I wasn’t deficient as I think side effects are much more pronounced if there is a deficiency! Could you request that your levels be checked just for your peace of mind? 

Nicola 

I have (which made me feel like I was being a pain in the a**, to be honest!). The doctor is trying to see if it is covered by insurance, which I doubt it will be. I'll keep you posted on what I find out!

You’re not being a pain in the a**, you’re just advocating for your own well-being! I know we complain about our NHS but insurance based medical care can be a minefield can’t it? Yes please let us know how it goes. 

Nicola