Struggling with chemotherapy

Hi Trojankitten and I’m sorry to hear that you’re struggling. Hopefully your oncologist will be able to answer a lot of your questions as to how beneficial it is in percentage terms?

Remember that the tumour has been removed and also the 1 affected lymph node so this is just the belt and braces. I was stage 3 with 3/17 lymph nodes affected. I had a couple of set backs after surgery so didn’t start chemo until quite late but the oncologist said that the 3 affected nodes were the closest to the tumour so she wouldn’t be unduly worried if I didn’t get round to chemo.

You could ask your oncologist for a dosage reduction to see if that helps as they usually start you on the maximum for your weight and height. Presumably you’re having 4 sessions so pat yourself on the back for getting halfway? 

Hope you come to a happy compromise with your oncologist - please keep us posted

Take care

Karen x

Hi Trojankitten sorry to hear you are struggling. I just wanted to offer some support as I have just started cycle one-  6 days in and already wondering how people manage this. I had 5 nodes affected and mine was grade T4a so I feel I have no choice but to carry on. I think from what others have said the oncologist can change the dose and help manage the side effects. That’s exactly how I feel - I said to someone it’s like having the worst hangover. My stomach is suffering this morning too. People say to be this will pass but also you need to have some quality of life while doing the chemo - definitely speak with your oncologist. Thinking of you and wishing you the best. Let us know how you go xx

Thanks for your thoughtful replies - and Ki21 I’m sorry to hear you’re having a hard time, too. 

I didn’t want to moan about my own things but just wanted to offer some reassurances that you are not alone! It’s strong medication and you should feel proud that you are doing your best to get through it so far xx

The other chemo is FOLFOX.  You have it fortnightly, an infusion followed by 2 days with a portable pump.  I opted for this one. Usually it’s 6 cycles but unfortunately for me I have to have 12 as I’m CTDNA positive.  I’m on day 6 of my 5th cycle and starting to come out of the worst bit.  By day 9-10 I’m ok-ish and able to do normal life.  Like many others I am on a reduced dose. Trying to get the tummy problems sorted is a real balancing act - I’ve not quite worked out the correct Imodium dosage yet. 

There are a lot of factors to keep in mind when agreeing to chemo, it’s not just staging and node involvement.  High MSI, Lynch’s, BRAF, positive CTDNA - all these reduce disease free survival rates so I’d discuss further with your team before you make a decision to stop but completely understand why you’d want to.  

Lee x

There's a thread under 'Diagnosis and treatment' on here called 'Capox Journey ' with comments of many people appended, and lots of good advice and wisdom.

I had 4 cycles of Capox over 3 months and it was pretty grim  the side effects are many and varied and often left me feeling very down. But I battled through and please believe me, when you come out of the end of chemo it is a marvellous feeling-hang in there if you can. Also I read that only 42 % of people who start Capox actually complete the full course as organised at the start-in other words, there is no disgrace in asking for reductions in doseage,or a week break etc-you should find that your oncology consultant will tailor your treatment quite carefully , reacting to how it affects you.

Thank you - I’ll have a look at the thread you mentioned.