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Beating Bowel Cancer Community

Stage 4 bowel cancer

Claire Hobden

The end of 12 cycles of Folfirinox

Hi everyone, my 1st Post here. My husband is 48, has stage 4 Inoperable bowel cancer with BRAF. He’s on day 7 of his 12th and potentially final cycle of folfirinox before a scan to see if he’s operable now. Oxaliplatin was withdrawn for the last round) otherwise he had each cycle on time & 100% dose. He stopped work for Xmas 22nd Dec & was due back tomorrow but I’m making him stay off until next week and we (I) 😂 will review it.
Anyhooooo the fatigue has hit him like a train. He’s sleeping like a koala and I basically shove food in front of him a couple of times a day and that’s that. Obviously I’m letting him sleep or just rest on the sofa (he gets up and dressed every day), but he’s so weak he can barley walk, lost 7kg on the last two cycles and has the most hideous halitosis the last few days. Stoma is behaving as it should but he’s lost his appetite and can only eat half of his usual meal size. Anything else I can do to help him or just make sure he’s hydrated and eating healthy food?
Claire :x:

Lizalou

Hello again @Claire Hobden

I think your husband has done incredibly well to keep working at all! Once the last few days are over he can start to regain his strength but don't be disappointed if he doesn't bounce back right away. Firstly, the chemo will obviously still be in his body for a while. Secondly, it is a very weird feeling to suddenly stop all that medical intervention. Thirdly, waiting for scan results us always horrible.

Having said that, small amounts of food, whatever he fancies, some fresh air and exercise (just short walks and outings)

I found milkshakes were ideal when I was recovering from chemo but you can get special drinks from GP or pharmacy if you are worried. I also found eating less of an issue if it just shovelled in (casseroles) or if I was doing something else at the same time (watching TV or eating cake with a friend)

Best wishes :x::x:

HH79

Hi @Claire Hobden sounds like you’re looking after him wonderfully. He’Ll pick up soon I’m sure. I’m also BRAF & had the same treatment run. I can tag you in any BRAF stuff hope you’re doing ok too lots love :x::x:

Claire Hobden

Hi @Lizalou

Thanks so much for your replies. Hubby has done well, you’re right. Stubborn bugger was determined to get through it while working full time. He only missed his chemo day each fortnight that was it! Ergo, it’s no surprise to me that he’s now come crashing down. Part of the reason is that we’re both self employed and he’s had cancer before (Hodgkins Lymphoma 2001) and his insurance paid out so obviously this time he’s not covered.

We wanted to check with you that his feelings now are to be expected and nothing unusual in patients that have had the same regime. He has felt quite a bit better today and done a few chores at home but even folding the washing had him sitting down afterwards so he knows his limitations for now. He’s going to walk to the bottom of the garden and tomorrow and start along the road at the weekend. I’ve bought him some full fat yoghurt, bananas, avocados, chicken, pasta etc. so he can build up some energy when I’m at work. He has a low temp of 35 this morning but it’s back to 37 now.

I think both of us now will be focusing on next weeks scan results. It’s crunch time really as I understand it so we need good news! Now going to have a good look through the posts for tips.

Thanks again for your help

Claire xx

Quote from @Lizalou:
Hello again @Claire Hobden

I think your husband has done incredibly well to keep working at all! Once the last few days are over he can start to regain his strength but don't be disappointed if he doesn't bounce back right away. Firstly, the chemo will obviously still be in his body for a while. Secondly, it is a very weird feeling to suddenly stop all that medical intervention. Thirdly, waiting for scan results us always horrible.

Having said that, small amounts of food, whatever he fancies, some fresh air and exercise (just short walks and outings)

I found milkshakes were ideal when I was recovering from chemo but you can get special drinks from GP or pharmacy if you are worried. I also found eating less of an issue if it just shovelled in (casseroles) or if I was doing something else at the same time (watching TV or eating cake with a friend)

Best wishes

Claire Hobden

Hi @HH79,

I really hope I’m doing right by him, by us! I’d love some BRAF info, it’s hard to find and even harder to find anything up to date. Pretty much all of it seems like a death knell too. I’m a sponge for info, hubby is happy to be treated and see what happens. He knows it’s likely he’ll not get his pension but he’d rather be less informed and live day by day. Hope to,chat again soon.

Claire xx

Quote from @HH79:
Hi @Claire Hobden sounds like you’re looking after him wonderfully. He’Ll pick up soon I’m sure. I’m also BRAF & had the same treatment run. I can tag you in any BRAF stuff hope you’re doing ok too lots love

Kathy L

@Claire Hobden . Myhusband has just finished round 12 of Folfiri, and will be starting another 3 months worth next week. They sound very similar in their outlook in as much he doesn't look or ask for information and accepts what his oncologyst offers. Me, on the other hand need to be one step ahead!
We have found that there was no real pattern to the chemo. Some time he would be washed out for a few days, other times not. He had his stoma reversal a year ago.
I applaud your husband for being able to work. Paul fortunately was able to retire early but I couldn't see him having the energy to do so.
However,the fatigue is very evident. Just simple tasks are sometimes too much. As a result muscle wastage (not weight loss) is evident and so hasn't got the strength to do a lot. This is very frustrating for both of us as he has always done repairs,maintained the house,cars and garden.
His appetite can be fickle. Often he doesn't feel like eating but when he does try the food, he realises that he was hungry after all! Taste comes and goes and we have things like bitter lemon drink, spicy and salty foods with lots of flavour.
Might be worth talking to colorectal nurses about small appetite just I case something amiss.
Kathy :x: