Hello

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Hi, new to this forum.

I had a T2 Colorectal tumor (very low down) diagnosed (along with 6 polyps - no cancer) in Jan 2024. As I had an old diagnosis of Ulcerative Colitis 36 years ago (not on any medication for last 18 years) it was decided to remove the rectum (tumour area) and whole colon: giving me a permanent ileostomy.

I had Radiotherapy in March/April (to shrink tumour), but no Chemo as I have a DPYD (genetic) deficiency in my Liver (Chemo can be very toxic for me): so they increased the Radiotherapy to compensate. Scans showed no cancer anywhere else, and had surgery beginning of July.

My rear wound has not healed yet 8.5 weeks later) and due to go into hospital on 4th Sept for the Surgeon to look at/do something (not sure what). The Oncologist wants to start me on Chemo, 2 types (reduced), as 1 Lymph node removed showed cancer near a polyp, which had a T1 small tumour all now removed (others around it were normal).

Nothing will happen whilst rear wound has not healed.  I was wondering if anyone has a DPYD deficiency, as debating the pros and cons of having it: as the Chemo is not treating any tumour etc. just 'preventative'. Thanks.

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi, 

    I have an dpd deficiency (assume it’s the same but not definite) and I’m having chemo.  I was on 50% dose for six months but it was a bit rough.  I did 4 rounds at 50.% and it’s now been changed to 40% for the last four rounds. It is much better for me at 40%, but some people with the deficiency can handle 60%.  Chemo fatigue is by far the worst of it.  Mine is also not treating anything and is preventative.  

    i hope that helps?

    cerysm

  • Thanks for your message, I will try and do that.

  • Hi CerysM,

    Thanks for your message. Yes, DPD deficiency is same, as the DPYD I think just refers for me having a genetic gene deficiency - which tells the Liver how much DPD enzyme to produce. 

    The rear wound I have from surgery has not healed yet, so may make the decision for me: as not having Chemo if this has not healed. 

    I was wondering, given all the side effects/toxicity, if it is worth taking?

    As I live alone (harder to cope with side effects I think) and the extra 'benefit' of taking was only 10%-15% which if on 50% dose (for 4 cycles suggested) would reduce that 'benefit' to 5%-7.5%.

    A bit of a dilemma for meThinking