DPD deficiency

Hi MummaBearb8d2d7 , just wanted to say I’m sorry that you’re facing this added complication! We’ve had a few people during my time here that haven’t been able to tolerate the chemo side of the treatment for various reasons & have had to stop it altogether pretty early on in their treatment still having great outcomes from the radiotherapy alone. From what I’ve understood over time the radiotherapy is the mainstay of the treatment, it’s the really important part. I know it’s easy for me to say but try not to get too stressed about the chemo side of things, it sounds as though your team will be keeping a really close eye on you which is great so any issues at all will be picked up really early & dealt with straight away. 

I hope someone that can relate personally to your post will see it & be able to offer you some reassurance. 

Nicola 

Hi MummaBearb8d2d7 i had low dpd. All my chemo was intravenous. My oncologist did his sums and i had 50% dose of chemo at the beginning of treatment other than feeling a bit sick and changes in taste i was fine. My bloods recovered quickly so for my dose at the end of treatment they uped it to 75% and i was fine. Im now just over a year post and cancer free as far as i know ( more results next week). Sending hugs. Xx

That’s so lovely to hear….he did say 50% and if I tolerated it I could go up to 75%. It just threw me to be honest…you get your head round this horrid journey and then a curve ball! Thank you for your reply, that’s given me some optimism!

I know what you mean. I was like i got anal cancer which isnt a common one and then i had low dpd which is rare. A lady i met on here had low dpd as well and she is fine. Its also important to remember that the radiotherapy is the most important part of the treatment. X

Hello MummaBearb8d2d7 

I am pleased that others on here have given you their experience on having to miss chemo, it really was a curve ball for you in addition to everything else you are facing.  But the radiotherapy (the most important part of the treatment) will go ahead so hold on to that.  And your experience may mirror Bungle's in any case.

Keeping everything crossed that that is the only hurdle you have to face.

Irene xx 

Hi! I also had low DPD and felt exactly like you but my consultant was very confident that it would make no difference to my outcome. I am now one year post treatment and all is well so far.

A big hug from Happyflower

Thank you for sharing, that’s super helpful