Bowel cancer treatment and side effects

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Fijigo

Six months CAPOX - Work possible?

I saw oncologist on Monday and due to start 6 months of CAPOX shortly. I would love to hear about experiences of working during chemo. I can work from home and pretty flexibly. I understand that everyone responds differently so there are no definite answers, but would find it helpful to hear from others. Thanks, Fiona :x::x:

Wegwe

I had three months Capox, and decided on a day to day basis how much I could (and wanted to) do. On average, I think I worked between 1/3 and 1/2 of my regular hours, and during those hours I was less productive than I normally am; chemo brain didn’t exactly help.
I liked not being a patient a few hours per day while I worked, but made sure I had enough time to go walk outside (two or three times a day, short walks) and sit and do nothing.

Forum user

hi @Fijigo I think you are right in understanding that everyone will respond differently to the treatment, and it is a massive bonus that you can work from home, I would say that in general CAPOX is quite a tough regime and symptoms do build as the cycle's go on, I myself did three months at the start of this year, managed ok but had really had enough by the last cycle and could have thrown the towel in a couple of times, I would say to see about a PICC line if you are doing six months as the infusion is not nice on the arms, it is doable but it will be hard work and not totally sure you will want to work through all of it, I am sure there must be a good reason for you having six months of treatment, but I am sure I read a post on here about a report that said there was very little difference in outcomes between people having 3 and 6 months of treatment, sure that someone will correct me if I am wrong, wishing you all the best take care cheers john.:x::x::x:

colourmesurprised

Hi @Fijigo , I’m on cycle two out of of four of CAPOX and have found it hard, to be really honest. However, I do tend to get my bounce back before the next round is due and I know we are all different. I wish you well, and I would say just keep an open mind regarding how it will affect you and your ability to work. :x:

Meg

Hi fiona,
I had planned to do the odd days work but in all honesty I didn't manage it at all.

I found it pretty exhausting and I did sleep a lot.

Plus my concentration just vanished !

I do know a few folk who have managed it though so hopefully you will be one of them :x:
Much love and hope it all goes well :x:

bowelbehavingbadly

@Fijigo I didn’t have oxy just capecitabine and to be honest I could have managed some work however I just stayed on leave until treatment t end. Is there any way you could try and the if you find it’s too hard the make other arrangements. If you are flexible and working from home it may well work out ok. Wishing you all the best for your treatment and fingers crossed for little to no side effects. Love. Sandra.

Sally South Downs

That’s interesting re the 3-6 months - I’ve just had my second of 8 cycles. So far so good. Love the 3 steroid days straight after infusion. I’ve got good veins and would very much prefer NOT to have the semi permanent Canula - discomfort in arm passes by evening.

Quote from @cyclingjohnny:
hi @Fijigo I think you are right in understanding that everyone will respond differently to the treatment, and it is a massive bonus that you can work from home, I would say that in general CAPOX is quite a tough regime and symptoms do build as the cycle's go on, I myself did three months at the start of this year, managed ok but had really had enough by the last cycle and could have thrown the towel in a couple of times, I would say to see about a PICC line if you are doing six months as the infusion is not nice on the arms, it is doable but it will be hard work and not totally sure you will want to work through all of it, I am sure there must be a good reason for you having six months of treatment, but I am sure I read a post on here about a report that said there was very little difference in outcomes between people having 3 and 6 months of treatment, sure that someone will correct me if I am wrong, wishing you all the best take care cheers john.

Ali

Hi @Fijigo, I am on my first round of capox and am at day 8 of tablets today. I have to say it has knocked me for 6 as I am a strong person and thought I could get through this more easily than I have. We are all different and I think the comment above to try it and see how you get on is best, it may be a good distraction for you. I too understood that there was no benefit of 6 months and that 3 should be enough but I’m sure there is a reason for you having longer. Good luck with the treatment, we all have to try and get through this together.

Ali :x::x:

DFTP

Hi @Fijigo , my husband is due to start 6 months of CAPOX a week on Monday. The oncologist said that he needed to be prepared that working full time would be a tall order but impossible to say given everyone's different response. I know they are throwing the kitchen sink at him, pT4a, N1c, EMVI+ etc and he did say that whilst there has been research done on the 3 months vs 6 months, with the extent of his histology they would like to go full throttle even if it only buys a couple of % efficacy. I guess we know we can reduce this down if needed.

My husband was quite honest with his employer about this but he is nervous as the company doesn't currently have any sort of enhance company sick pay. They've been good and kept him on 80% salary whilst recovering from the op but we don't know what they are going to do for the next 6 months.

re the PICC line - is this something that can be done straight off the bat at his initial session or do they typically try you in the cannula first and see how you fair? They've struggled with cannulas on him both in the back of hand and inner forearm during the recent scans and surgery so I'm thinking this will be the way to go for him.

Meg

The sick pay is such a worry @DFTP isn't it , one of the nurses doing one of my scans was telling me she had to go back when it run out even though she knew she wasn't ready.

DFTP

@Meg - it really is! Can't seem to catch a break with this wretched situation. Might have to sell one of the kids! ;)

Lucy118

@Fijigo, you’ve had some great advice already and you are right everyone is different. I started on CAPOX but got switched to FOLFOX after 3 days of tablets due to severe diarrhea. (It’s the same drug but via an infusion so is slightly more tolerable for some). I did manage to work a little but some days I couldn’t do anything.
@DFTP, I think they normally try the cannula first. However it may be worth mentioning to them that they normally struggle finding a vein. I was given a PORT after the first infusion which was brilliant :x::x:

DFTP

@Lucy118 - thanks very much, will do

Alister

I think a lot will depend on how understainding your company are
I work from home & my boss simply said if I wanted to work he would not stop me, but if I needed to take a break at any time I should do so.
if you have a decent boss it should not be an issue, if not stuff them!
BTW do you have a mortgage, if so check to see if you have critical illness cover & claim if you have not already done so it will lift huge worries from your mind (it di for me anyway)
it is often overlooked with everything else that is going on.

bartoni79

I’m not sure I could work. Fortunately I have an element of paid sick leave but my job is full on so it’s tricky to dip in and out. I also struggled a lot with side effects of CAPOX in cycle 1&2, ended up in hospital and had to move to a FOLFOX regimen (I’m only on cycle 3) so the journey of start to finish may not be as linear or as simple as first thought.

Fijigo

Thank you all for your responses. I have 8 weeks on full pay but recovery from surgery is being delayed by cellulitis that won't clear so eating in to the time. I have plenty of annual leave too so can use that too. I am CEO of a small charity so to an extent my own boss and can work really flexibly. I am also painfully aware that the charity funding depends on me and the longer I am out, the more vulnerable the charity becomes. For the sake of the charity I feel I should just resign so they can replace me but in reality that's not affordable. I have a smallish military pension that will rule out any help through benefits etc. A real dilemma. Oh well, time for a bit more "wait and see"! (I'm rubbish at that bit.)

Lucy118

@Fijigo, having the flexibility will be brilliant and you’ll be able to work when you can. If you keep a diary of your symptoms you’ll be able to see a certain pattern and be able to work around the bad days. Symptoms can vary from month to month too. Lots of luck :x::x: