Stage 4 bowel cancer

berkshireboy99

Colostomy then Folfiri

Hello, after suffering very very badly since Feb with radiation proctitis and some other swelling in the bowel arena I have had to make the decision to go ahead with a temporary colostomy. It’s got the point where I am house bound and not able to do anything at all so it’s not been much fun although I am know an expert on a lot of tv shows.

The loop colostomy terrifies me but I don’t really have much choice. I was surprised how discreet the bags were when the stoma nurses showed me last week.

I’ve agreed to undertake folfiri chemotherapy after I’ve recoveree from the operation - not sure when I’ll be starting this yet.

I still have distant lymph nodes appearing on scans so chemotherapy again appears the only option.

Has anyone take folfiri and managed to work as well ? I really missed work when I was off for a long period last year.

Sarah Morgan

@berkshireboy99, my husband has had 10 cycles of Folfiri & is managing to work up to 5 days out of the 2 week cycle. He is fortunate in having a very understanding employer & he works split shifts so can rest in the middle of the day. Sarah :x:

waiteh

My husband is having cycle 10 today of folfiri. He is office based and at home. He works when he can a bit like Sarahs husband above. After his diagnosis we made a decision for him to only work if we needed to. Do more hobbies and see more friends. That may change as time goes on as the chemo seems to have been effective so far.
Aside from done hair loss and feeling tired (this I think Is from having injections to stop white blood cells dropping, if he didn't have these he would have many more better days) at the weekend he was digging up or drive and laying concrete!
Hope you get a date for surgery soon
Did they give u any idea when chemo would start after the op?

Sarah Morgan

@waiteh, it sounds like you’re husband isn’t doing too badly. Ian had a week delay last cycle as he had a rash but he’s very much into a routine now with the Folfiri. He’s got 2 more cycles then a scan & is hoping to take a break over the summer when he’d be off work anyway & the boys will be off school. How are you all coping? Sarah :x:

berkshireboy99

Seems really pathetic but I really hate the idea of losing my hair with folfiri

Sarah Morgan

@berkshireboy99, your hair may just thin. My husband was balding anyway & what hair he has has thinned. He’s noticed more that he’s lost body hair! Thinking of you :x:

Lirio345

I have been on FOLFIRI for three and a half years and have not lost my hair @berkshireboy99! It does not happen to all. I was also virtually housebound before my colostomy so to me having a stoma was such a positive thing, take very good care, Kim

waiteh
Quote from @Sarah Morgan:
@waiteh, it sounds like you’re husband isn’t doing too badly. Ian had a week delay last cycle as he had a rash but he’s very much into a routine now with the Folfiri. He’s got 2 more cycles then a scan & is hoping to take a break over the summer when he’d be off work anyway & the boys will be off school. How are you all coping? Sarah

We are doing ok. Kids 4 and 5 just take it all in their stride that daddy has quieter days. We hope to have a week away in June so may asked for a week breath. We are ok the same schedule as u. 2 more cycles and scan so heading for July I guess. His CEA was 580 just before cycle 1 and we had news that yesterday it was 6! Come on the chemo!!

Quote from @Sarah Morgan:
@waiteh, it sounds like you’re husband isn’t doing too badly. Ian had a week delay last cycle as he had a rash but he’s very much into a routine now with the Folfiri. He’s got 2 more cycles then a scan & is hoping to take a break over the summer when he’d be off work anyway & the boys will be off school. How are you all coping? Sarah