Chemo free week - feeling worse?

Hi . Is he still getting a good amount of output or could he potentially have a blockage? Might be worth ringing your 24 hour emergency chemo number (or the chemo dept at the hospital) - I was always told that they were there for reassurance not just emergencies? Generally you feel a bit better on the week off so hopefully this is just a blip

Take care

Karen x

Hi lovely, the output varies, starts off watery but gets better and thicker as the day progresses then watery by night. Definitely not as normal but not purely watery either. He has had a blockage and doesn’t think it’s that because the tummy pains are not on that level but worth him keeping hydrated and monitoring it! Thank you! 

Hi , sorry to hear about your husband. My Mum was very ill for 3 weeks after her first chemo cycle, she could barely get out of bed. She was very much like your husband thinking there's no way she could get through months of chemo feeling like that. Her dosage was lowered a couple of times which really helped and she found it much easier. The lower dosage still worked really well in shrinking things. 

I don't have any knowledge specifically of the side effects your husband is experiencing, but def give the hotline a call as they'll be able to help sort those symptoms out. We used the hotline a fair few times, sometimes just as a precautionary measure. 

Hope he's feeling better soon. 

It’s really strange as my mum’s oncologist said from the first encounter that her symptoms would be worse on her off week . Yet I don’t read that much on here any more .

My mum too had to get her dose reduced . Is it colic type pain your husband has ? My mum did and used over the counter buscopan but best pass that through his team but it really helped ,

My mum’s middle doses were easier . Also the second year at a lower dose much more tolerable than the first year . You can reassure him they will work to find his own tolerance dose .

Take care ,

Court 

Thank you! That’s really interesting to hear what your mum was told. I agree that I haven’t heard much about the off week not being so good. He’s definitely getting tummy pains, loads of gurgling, it’s actually quite impressive! He took the Loperamide earlier which has thickened the output but I think made the tummy noises louder! The pain has lessened though. 

He has kept a diary of side effects so we will run it all by the oncologist. Nothing had been bad but you don’t know on your first cycle what to expect and he really did think the tablet free week would be the easiest. 

IJP - sorry to hear your Mum had similar. Maybe hubby does need the dosage looking at of the Cap tablets? 

Really appreciate your responses and that this isn’t completely unusual. Hopefully as the days go by he will feel better - in time for infusion. number two

Thanks . It sounds like a dosage reduction may not be a bad idea. Lots of people do have a reduction after the first cycle as the oncologist can never be sure how the body will react until the first dose is actually given.  Once they get the dosage right I'm sure he'll fly through it. My Mum was able to go out for coffee, lunch etc on her chemo free weeks more often than not. 

It could also be a bug unrelated to the chemo. That's a possibility too. 

Hi SarahSerena, 

I did 1 cycle of Capox which was switched to Folfox as my stoma output was too high. I had a picc line had still had Oxyliplatin intravenously and then had a pump attached. I was on 16 Loperamide and 8 Codeine as needed. My stoma output was fairly high before starting chemo. Do let your team know as they may increase your husband's medication. Just have to be careful he doesn't become dehydrated. Maybe you could call the emergency number tomorrow, as Kareno62 has said, it's not just for emergencies. You really can call for reassurance or to check something. 

Cheryl x

Thank you all! He’s feeling back to normal today thankfully! Perhaps it really did take those days to get everything out of his system or maybe he caught something, either way we’re glad he’s ok now. We will monitor it and of course run it all by the oncologist.