Low DPD levels

Hi  Shell5731,

From what I've read, Dpd testing as a routine is quite new, so it's good your team are on it and will reduce your dose of Capox. Sadly this wouldn't have been the case for your sister in law and she had a bad reaction. Things have come a long way, my husband's treatment was delayed until his dpd results were through, so they're not taking any risk.

Hope the fact they have discovered you are low dpd and they will adjust your treatment will reassure you enough to go ahead with your chemo.

Love Frances xx 

My wife was offered a clinical trial last june.

They asked if she wanted to have a blood test for DPD,it was purely voluntaarily.

Thank goodness she did has she has a gene which makes her dpd very low.

She couldnt go on the clinical trial so she had 8 sessions of chemo on 50% of the dose.

Thank you so much for this Steveho t I think that is what they are proposing for me , it has really helped to put my mind at rest, did your wife have bad side affects? 
So glad she had the DPD test, I hope she is doing well. 

Hi Shell5731.

So glad my comments have helped you.

She was having chemo on a saturday then coming home with a chemo pump which was empty by monday.

She was fine but a couple of days later she was tired.

She got better as the days went on but within a few days she was good and by the time the next chemo came round in 2 weeks she was good for the chemo.

This went on for 18 weeks.

It was half the dose but double the time with less side effects.

Hi Steveho thanks again for the reply I think mine is slightly different treatment but it’s still very reassuring. Glad she got through it ok. 

Hi Shell5731

I had my diagnosis and op in 2017 and was placed on a high dose of capecitabine. I was on a 3 week cycle; 2 weeks on 10 tablets a day and 1 week off. During the second cycle I started to experience extreme pain in my stomach and stopped taking the the tablets. The pain stopped fairly quickly afterwards. After much discussion with my consultant he decided to get a DPD test (not routine then), which showed low levels. After further discussion I was persuaded to go on to 5FU intravenously at 50% dose. (The 2 medications are very closely related).

The downside was that I  had to visit the hospital twice a week; once for a blood test (Monday) and then for the 5FU (wednesday) for the next 20 weeks.

The upside was no pain at all for the full duration, just some tiredness towards the end of treatment.

Whether or not you decide to go ahead depends on your own circumstances. I was given a 75% chance of no recurrence, increasing perhaps to 80% with chemo. I worked on the principal that any improvement was worth it.

I have recently had my end of year 3 CT scan and a colonoscopy and so far so good.