Advice on chemo side effects

Hi Hopeful88 and a warm welcome to the board. I’ve attached a link below to the usual chemos used for bowel cancer and you can click on the one that she’s having for further information.

www.macmillan.org.uk/.../chemotherapy-for-bowel-cancer

Probably the most common one is Capox/xelox which is oxaliplatin through an iv and then 2 weeks capecitabine then a week off. We have a top tips post which I’ve also attached 

 CHEMO TOP TIPS UPDATED 

I’ve had Capox and didn’t suffer any stomach pains but chemo can affect everyone differently. Something quite important is that she takes the capecitabine tablets 12 hours apart with food. I was told it could be something as simple as a slice of toast or a few biscuits? If she’s not doing this then it may be the cause of her problems. They do drill into you that you’re not to take any other medication without checking with them first but that’s just to make sure it doesn’t react with the chemo. She should have been given a 24 hour chemo helpline and this can be used if you’re worried about anything not just for emergencies.

It’s a difficult situation because the oncologist can’t make her have chemo although may suggest a further reduction? If she’s finding rich food too much then maybe a simpler diet could help? 
It is tough when you’ve a lot of side effects - struggling to keep food down only to find it exploding out of the other end an hour later but, as you say, she is only 60 and there are a lot of success stories on here so it is worth persevering with.

I really hope she is able to give it another go and she’d be very welcome on here too

Take care

Karen x

Just another thought - she doesn’t have a stomachs ulcer does she? Your comments about rich foods making her sick sounded very like my husband when he had his ulcer x

Chemo was actually tough on my mum’s colon . Does she still have her tumour in situ ? 
What you describe is how my mum was . She did take buscopan , she did have a few hospital admissions for fluids and her electrolytes were easily knocked off and easily corrected. Something to ask about .

I can only encourage someone to go with her to speak to her team if she is up for that . My mum had a slight dose reduction which really helped manage the side effects .

Stage 4 is definitely a marathon and not a sprint and getting the balance of everything can take a few cycles . Mobile ambulance is a great idea .

She is a young woman and it takes time to process the news and see if she is responsive to treatment . But absolutely not without hope . We got that news 15 years ago and mum is still very much here but now 82 and enjoyed seeing me at 5:30 am as she had a wee slip out the bed . We are still balancing the meds and this time too much pain relief . But nothing coffee and cake at that time in the morning did not sort out . I am only telling you this to encourage you that getting the balances is not instant but not a sign it is not working . Despite it all my mum got a brilliant scan result . 

She has only started first line treatment so lots still to consider but it can be a tough treatment on some . My mum finds chemo harder than any of the surgeries she has had .

Send her our love and strength and hope it becomes more manageable soon .

Court 

Hi Hopeful,

I've just finished capox chemo and for my first few cycles the capacitabine tablets really affected my bowels with cramps and increased movements. I was going 5/6 times a day but normal movements.

I did figure out the 2 were linked though and found immodium helped more than buscopan did.I also found rich foods for the first week of the cycle really made me feel ill. I felt nauseous and didn't feel like eating but eating didn't make me feel any worse and actually eating little and often of plain foods stopped the nausea. 

My oncologist said the capacitanine makes the bowel a "little angry" and my symptoms were normal and I found the tablets symptoms lessened as the cycles went on but the I fusion side effects worsened.

I hope this helps a bit? Make sure you post any questions you do have. This forum is so helpful.

Sorry for the delayed reply. I had quite a bit of nausea with that treatment.  Everyone has a different tolerance level for this. You didn't mention if she has been given anti-nausea meds but if not, someone needs to ask her doctor if this is advisable (assuming it's appropriate). I found rich foods made things worse. I ate a lot of plain rice and other simple foods, that seemed to help tremendously. 

If it's actually bowel problems then the immodium suggestion seems good, personally i was able to tolerate this symptom. 

Thank you all very much for your insights and kind words. 

court indeed the tumor is still in situ. Shortly after I wrote the original post we heard that the surgeons would review operating to remove the tumor. Originally we had been told surgery wasn't an option, but I imagine that the current quality of life and the chemo potentially aggravating the situation made it so they were willing to review. 

We received our first bit of good news yesterday: surgeons are happy to operate. I'm not clear on what sort of margins they're hoping to get but I'm hopeful it will at least reduce the irritation, inflammation, and pain. Perhaps the chemo is better tolerated after? Hoping to get a meeting with surgeon next week to talk through the operation and what we might be able to expect. 

Also one thing that completely surprised me is that even with the little chemo she has been able to tolerate so far, the tumor has already shrunk. I think that is absolutely amazing and not news I had dared hope for so soon. 

All of this gives reason to be hopeful! 

Surgery is next step to focus on and I hope she will be able to start treatment again once recovered from that. I will definitely keep all your tips in mind re anti-nausea meds etc. so I can share those with her then. 

It’s the hope it brings that propels you all forward . Sounds as though she is getting a great response despite the side effects .

Hope the surgery goes well . My mum had a slight chemo dose reduction after her primary was removed so can’t say which helped the most but it’s certainly less work for the chemo to do .

Hope she got a much needed boost . It really lifts the spirit . I can see from your text the hope it has brought . 

Court 

Hi Hopeful88 

This is an amazing result . So glad it’s brought some hope to you all .

They are obviously satisfied it’s an appropriate point to do the surgery and they know what they are doing .

I can tell from your post the joy it’s brought getting the news of shrinkage. She clearly is responsive and that’s the best thing .

Send her our love and hers to many more days of successful treatment and happy family times .

Court