Folfox or Capox/Xelox - experiences?

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Hi everyone, 

31 years old and I was diagnosed with colon cancer end of January after a colonoscopy where they found a malignant tumour in the lower end close to the rectum. 
Within a week the MRI, CT, blood and biopsy tests were done and the surgeon had me and my partner in her office where she confirmed it was cancer and talked me through the possible ways to go ahead but explained they always do the multidisciplinary meetings. A few weeks down the line the meeting was done and surgery before chemotherapy was decided. 

I had my surgery on the 19th of April which was successful, keyhole plus an incision by the bikini line, and I was fitted with a temporary ileostomy that will be reversed after my chemotherapy if finished. After a 10 day stay I got to go home and last week I met my oncologist for the first time. 

He talked me through the results after my surgery, my surgeon had talked me through some of this as well before I left the hospital. 
The tumour was a T3 and not a T4 as they thought initially and they removed 33 lymph nodes where 1 had cancer in it, which means chemotherapy. 

He mentioned two different types of chemotherapy treatments, all depending on how my stoma is doing next week when we have our follow up meeting. 
1: was Capox/Xelox for 3 months with a monthly visit to the hospital and tablets 21 days and 7 days rest.
2: was Folfox for 6 months with a 48h visit to the hospital every two weeks and a picc line. 

The first option would be out if my stoma would stay highly active and liquid consistency because not sure tablets would work as well as they should. 
I feel slightly torn as I obviously would love to be finished with my treatment in 3 months instead of 6 but also worried that they might not work with the stoma if side effects such as diarrhoea would kick in. Also not tried to incorporate veg or fruit in my diet yet as I'm not by the 6-8 week mark yet and don't know how these would affect my output either, obviously I could try and stay without trying them for another 3 months but not sure how much good that would do for my body either. 
My stoma is still quite high in the output but half the time it's not as watery liquid as before. 

Interested to see who's had either of these treatments whilst with an ileostomy stoma (temp or perm) and if there's been any issues with the stoma, especially with the Capox with the tablets?

Quite a long post, but a lot of thought in me head I'm trying to make sense out of. 

Thank you :)

  • Hi Missem,

    So sorry to see that you have had this problem, and at your age. I was offered the same for mop up chemo after my surgery. 3  months of Capox or 6 of Folfox as the oncologist was concerned how it might affect my ileostomy.  I had already experimented with Loperamide and  I said that I would manage the output and went for the Capox. Before the chemo I was getting a mixture of output but no real problems and I stuck to the recommended diet.. The oncologist gave me a good supply of loperamide and I was taking two half an hour before each meal if I needed it. The only time that I had diarrhoea with the stoma was soon after the surgery, not while I was on Capox.

    I think that if you can get the output under control before the chemo you will have a good chance of managing it during it.

    Are you using Loperamide at the moment? Can you identify any foods that affect your output? Also, if you go with the Capox can you still have the PICC line, I had one and it can help with the Oxyplatin. If you start on Capox and can't control it will they switch you?

    Wishing you all the best, which ever way you go, the treatment has worked for me so far and I hope that it does for you.

    John

  • Hi John, 

    I did get Loperamide at the hospital, but my surgeon did seem to not be too pleased with it and wanted me to be off it as much as possible as it made it almost too firm instead. They did send me home with some just in case, and I did use it one day early on after getting home and it seemed to work just fine. After that I've forgotten about it until now when you mentioned it again. 

    Did you try any type of veg or fruit or just stick to the low fibre for the time being? 
    One food I've identified that really doesn't agree with it is white rice, everything else seems to be working. I am sticking to the same things a lot to try and keep it under control. 

    I don't know if they can switch, that is something good for me to be able to ask the oncologist on our follow up. Assume they must be able to but a good conversation about it ahead as well. 

    Thank you Slight smile

  • Hi Missem,

    I think you are doing the right thing by sticking to what you know works and then introduce new things one at a time, I am surprised at the white rice, I majored on white bread, white rice and pasta all is smallish portions to begin with. I was told no vegetables for a couple of weeks and then had carrots. I had a lot of eggs, cheese and greek yoghurt. Moved on to white meat and so on. I drank a lot of cranberry juice for the vitamin C I might have been missing.

    I was happy to have  an output that was up to toothpaste thickness or slightly less, obviously the surgeon doesn't want it solid. You just don't want it coming out as a clear liquid! I had more to do with the stoma output with the stoma nurse than the surgical team and they were quite happy for me to use loperamide when things got a bit loose.

    I think that the oncologist is worried that the chemo pill will go straight through, but I never saw one. If you go with the Capox ask the oncologist for a prescription for the loper, you don't want to be buying imodium from the chemist!

    I hope you manage to sort it out the best way for you.

    All the best, John

  • Hi John, 

    I was surprised about the white rice too. Mash is the best working one though so I'm trying to stick to that as much as possible. 

    It's better now as it might be settling in a bit better so I'm hoping that the tablets might work but I will just have to wait and see what the oncologist says tomorrow. I did have my pain pills going straight through me when I was in hospital so they had to figure out what to do as I was still quite a lot of pain at that point so think that might be what's dragging in the back of my head. I've had paracetamol in a few times in the last week and that seems to work just fine so here's hoping. 

    Thank you very much.

    Em

  • Hi ,

    When my mum was first diagnosed we were told by someone that when the husks of white rice break down they cause the bowel to push through ! So good for constipation! If it’s true then I could see how it could speed things up ! It’s my go to solution for a wee bit constipation!

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi Em,

    Best om luck with the oncologist tomorrow, I would be interested to know what they advise. One thing I remembered about the loperamide is that one of the chemo staff said that if the pills were going through you can get it in liquid form, although my stoma nurse didn't think it was necessary and I only stuck with the capsules. Slow release capsules don't always work too well with an ileostomy!

    Cheers, John

  • Hi Court, that's very interesting. 

    It would explain why it really didn't work as expected for me. Learn something new all the time, which I like. 

    Thank you, 

    Em

  • Hi John, 

    Thank you, it did go well. 
    We decided after a chat to go for the Folfox, mainly because of the fact that I've started to take my allergy medication as spring has started to set in and I'm allergic to most types of pollen, the prescription tablets I take are quite big and I could see bits of it in my stoma output later on. Which made us talk about that even if I could get the stoma output under control, will tablets work. Not getting all of the antihistamine isn't as bad as maybe not getting all of the chemotherapy treatment. So it takes away the second guessing or stress of wondering as well :) 

    Would have loved to been able to be done in 3 months with a lot less hospital trips, but 6 months will hopefully pass by quickly as well :) 

    Have a lovely weekend, 


    Em

  • Hi Em

    Good to hear it went well, you seem to have a good raport with the oncologist and, seeing what you say about the allergy pills, you have probably made the right choice. (viewing what foods etc comes though to the bag is a delightful hobby!!) Doing it this way you are giving yourself the best chance to knock the cancer on the head and get on with the rest of your life.

    Not having had the Folfox I can't offer any advice but if you get questions during the six months I am sure there are people on the forum who have been through the same procedure who can help.

    With best wishes for a successful outcome, John

  • Thank you John, I am looking forward to getting started now just to be one step closer to being done and getting on with life as normal again. 

    Thank you so much for all of your advice and help, I really appreciate it. 

    Em