Hi everyone,
I find myself back at that horrible waiting stage again. After 10 years free of stage lll colon cancer I’ve had a positive fit test, which has really taken me by surprise.
In 2015 I had my sigmoid colon, part of my small intestine and part of my bladder removed. 1 session of 5FU then put me in hospital for 3 weeks and it was assumed I had DPD deficiency (not tested for back then) and chemo ceased.
colonoscopy booked for the 15th. Would love to here from anyone who has DPD or been recalled after 10 years.
Hello Desiderata,
I have the DPD deficiency. Stage 3 cancer last year. I was given CAPOX but from the get go the half dose of capecitabine ( which is the pre-drug for FOL) didn’t agree with me. It caused cardiac vasospasm and my treatment was completely stopped. Took them a while to find out what it was though.
Hi there,
Thanks for getting in touch and sorry to hear that you have dpd too. Were you not tested for it prior to chemo ?
Hope you're feeling better now
Thank you, I am very much better now.
I was tested and they knew I had it but decided to go ahead anyway with a half dose of capecitabine. What did annoy me was that after my first horrific reaction to the drug, they underestimated how badly it had affected me and gave me another dose the following cycle, so I had to go through it again. I think it’s because the particular side-effect is so rare that they didn’t think it was that.
I suppose I can understand why they went ahead the first time as they didn't know quite how you'd react on a half dose and they want to help if possible. But then they put you through it again after they knew how bad you reacted.....hmmm confusing.
So sorry you suffered so much but glad you're feeling better :-)
Lovely to connect with a fellow DPD'er, let me know how you get on x
Hi Gemmary, thanks for getting in touch.
I'm so glad that your colonoscopy was clear and you have given me hope that my result may be similar. I can imagine it's a bit frustrating to not know what caused it to be positive though.
Are your investigations ended now that was clear?
Good wishes Jayne.
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