CAPOX JOURNEY

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Morning all, 

Today, 3 weeks after 5 weeks of radiotherapy with chemo tablets (Capecitabine) hubby is starting his IV CAPOX regime. Oxaliplatin today followed by 2 weeks of capecitabine, 6 days off then repeat another 3 times. 

He is currently feeling great! The best he has for the last 4 months so going in knowing it’s not going to be the best is a little worrying. 
BUT this is what they recommend to give him the best chance and we are holding onto that thought and planning what we might do in August/September. 

I’ll post all the good & bad on here as 1. Therapy for me ( it does help to write about it) & 2. Info for anyone who is going through the same thing. 

please let me know what you think and any hints & tips for either of us to get through the next 3 months. 

Good luck in all your personal journeys. Taking it one day a a time. 

B x 

  • Hi Lee, good luck with the appointment at the Marsden. I hadn't realised it was less than 15% for CTDNA - I can see how it's difficult news to get, but then as you say, knowledge is power and the surveillance will be there for you. Sometimes I wonder if I should have done the trial - I was given all the information just after finding out I needed chemo, was freaking out anyway as it was a high grade cancer and I just couldn't handle any more information at that point! It is definitely the way forward - increasingly personalised cancer treatment. I find the whole concept of over treatment really interesting too - fantastic research being done.

    Well, I absolutely love a garden centre!! That's quite a big day out Joy! Hope you got some nice plants. I wasn't quite so adventurous.. did manage a walk in to town, was hoping to go further but still pretty tired so pottered doing jobs around the house but had a happy hour reading in the garden. 

    xx

  • I can't speak for the whole of the US but neither CTDNA or immunoscore testing was offered to me and I'm in the states. The immunoscore may not have been applicable in my case since there was no question I needed chemo. (My tumor was initially inoperable and chemo was needed to shrink it.) But I would think the CTDNA testing might be valuable during surveillance so I'm going to ask my oncologist about it. 

    As you said, these tests give us a glimpse into what may be available in the future. I hope that the generations to come can get the correct targeted approach. It is an exciting possibility. 

  • Don't feel bad about refusing the Oxaliplatin next cycle. I was told that the benefits decrease with each succeeding infusion so you've probably gotten most of the benefit already. 

  • Thanks , Susan, that's just what i needed to hear Pray  Monday is my oncology appt so I'll get last cycle plan then but will ask to skip last infusion and see how he reacts. Last time,  consultant did say " We tend to over-treat with the chemotherapy "

  • Good job with the walking! It'll get better.

    I must say I am so jealous of you having nice enough weather to go out into gardens etc. We had a snow last night... not much but enough to remind us it isn't garden season yet. (I live in Michigan which nestled next to the great lakes and on the Canadian border.) My husband has started seeds for our vegetable garden in the basement but it will be all month to 6 weeks before we can consider putting them outside. 

    I'm really looking forward to the garden this year. I was too sick last year to even go down to see it. This year I want to help with it even if it is just helping harvest a few things. Little things like that will make me feel so much more normal again. 

  • Hi Susan, sounds like a beautiful part of the world you are in, snow aside!!! The weather here in the UK (particularly in the North where I am!) is pretty unusual for this time of year - it really does feel warm! We have just started to get some planting done and have a few sunflowers just out. We never have much success, maybe this year! Your vegetable garden sounds lovely, it's such fun growing veg.

    I totally understand how seemingly little things have such significance now - gardening in itself is so therapeutic but when you think back to last year you must appreciate it even more. Any glimpse of a more normal life resuming is so welcome! 

  •   what dosage oxy were you on ? OH asking as he’s feeling rough today and is already thinking if he can ditch it  Flushed not had that much in way of 2 way conversations with his oncologist.  He’s basically told what’s happening not discussed at all . 

  • Do you know Bella, I'm not sure of Oxy dose. Bloomin' big bottle of the stuff! 500 or 600 ml , but that could be wildly wrong.

    I'm acutely aware of the risk of causing harm here ,by saying I might skip last infusion, cos we all know chemo can be awful but we also know you really must try our absolute best to tough it out. IMusclem soon to become a Grandad for the 1st time , daughter is in London, I am 120 miles away so when that baby drops any day soon I need to be able to drive ,and not be incapacitated by the damned pinMuscleand needles... I would urge your other half to gird his loins and not look to skipping infusions unless really serious side effects kick in. Chemo is tough but we are tougher Muscle 

    Xx

  • Dosage is based on your weight. It'll be something like mg per kg. It's dissolved in a carrier liquid that makes up most of its volume. 

    I can't tell you what my doses were but they were able to reduce my dose twice to try to manage the side effects. 

  • Oh he knows that if he can he will complete the 4 cycles but also to know he has options has helped him so much today. Thank you for your honesty and advice. None of us want to be in this ‘Club’ but to have the support of you all is certainly helping us both. 
    Thank you