DPD deficiency

Hi Ifan 

Unable offer any suggestions but hope others will be in touch soon.

It is a difficult decision knowing what to do with treatment -v- symptoms.  I stopped my iiv treatment of Oxi along with Cap. but continued on with an increased dose of Cap tablets and I've been left with continual peripheral neuropathy.  

You could ask for a second opinion from a consultant who has more experience with treating others in a similar position to you.

Take care

VickiLynne 

Hi Ifan, what a very difficult situation you find yourself in. It is a rare condition, but you are the unlucky one who has to decide. I think you could do with more information i.e. the stage of your tumour and likelihood of recurrence. No predictions are certain, but it would give you a better idea of the risks involved. 

I think VickiLynn's idea if a second opinion is a good one. 

With very best wishes, hoping that you get some help with this.

Big hugs, Seaspirit xxx

[Edited by admin] dpd deficiency isn't that rare - a 100% deficiency is very rare but if you search this forum you will find stories from others too.

problem is that they don't know enough about the deficiency to reliably predict the reaction with a 50% deficiency.

You've had the resection - what were the pathology results like? - they should have told you this by now.  If not then ask your colorectal nurse.  I struck up an email conversation with mine to find out anything I wanted to know.

[Edited by admin]

Good luck in whatever you decide.

Thank you for your kind response.

Still can't decide. How do you go about getting a second opinion?

for nhs just ask for one, you are entitled to ask for one. For private contact a company and just ask :)

Thank you for your response and I'm sorry for the effect it had on you. I have read about the possible impact of chemo and DPD and this worries me greatly.

Did you have DPD deficiency? Did you receive advice or were you left to your own devices.

How does one go about getting second opinions?

Thanks Soultrader. Thats a great help.

Not sure if this will help - I was told that 5FU via PICC line pump (which is what I am having) has fewer side effects than capecitabine ... I echo the advice to get all the info you can. Hope you’re able to get some answers. 

Hi all

Could an alternative type of chemo be offered other than 5FU ?

Michela

Thanks Annamouse. I have today been to see another consultant who managed to provide more information about DPD and I have been convinced to try the 50% dose of 5FU. It will be monitored very closely for worsening side effects and stopped immediately if things go wrong.

Thank you Michaela, the consultant tells me that 5FU/capeciaibine is the only suitable drug.