Bowel cancer treatment and side effects

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Josianna

Would be really grateful with advice/any tips please

Hi everyone, I hope you are all doing well. I was wondering if I could ask any members if they have received Oxaliplatin (tablet) and Capecitabine (drip) treatment. This is the treatment that has now been recommended to me for the next 3 months following my surgery just over a month ago.
I received my histology report and my tumour was downgraded to a T2 ( it had been a T3 at diagnosis) so that was a positive!! However, it had spread to 2 lymph nodes so that it why mop up chemo has been recommended. The consultant has given me a choice of having a 6 month course of Capecitabine tablets only that have milder side effects or a 3 month course of Capecitabine tablets combined with Oxaliplatin drip given every 3 weeks at the hospital. The combined tabs and drip will have more severe side effects but in terms of treatment the consultant described it as 'the icing on the cake'
What do I do??? Has anyone else had the combined treatment and was it as awful as it sounds? Jo :x::x::x:

Liz Blakelands

@Josianna Hi, I didn't have the combined treatment as had chemo nearly 4 years ago and I don't think then the combined op was as common, I certainly didn't have a choice of chemo. I just had the 6 months of Capecitabine tablets. The thing with chemo is you don't know till you start on it how you will react to it. Some people sail through, others have a tough time of time.

For what it is worth, I think that given the choice I would go for the combined option. It's a shorter course, done and dusted sooner and the consultant saying it was 'the icing on the cake'. I think that is a big steer that the consultant thinks it is the best option.

Hope that helps
All the best
Liz :x::x:

trunky2

Yes, I've had 3 months of CapOx (4 cycles).

It's perfectly manageable and I would not rate it as particularly severe side effects, but don't thinks it's a complete walk in the park. You may feel tired, probably at some point during each cycle you may get diarrhea. You may lose your appetite and lose weight.

I'd plan for plenty of loafing around, watching TV, sitting in the garden etc.

After the first cycle you will know exactly what to expect for the remaining cycles. Generally you should pretty reasonable a few days after finishing your Capecitabine tablets and you should be able to get out and about during your week's break.

I was able to return to work 4 weeks after completing chemo. I wasn't fully recovered (that took several months) but at least you know that every day you will feel some improvement.

Josianna

Ooh that's reassuring

Quote from @trunky2:
Yes, I've had 3 months of CapOx (4 cycles).

It's perfectly manageable and I would not rate it as particularly severe side effects, but don't thinks it's a complete walk in the park. You may feel tired, probably at some point during each cycle you may get diarrhea. You may lose your appetite and lose weight.

I'd plan for plenty of loafing around, watching TV, sitting in the garden etc.

After the first cycle you will know exactly what to expect for the remaining cycles. Generally you should pretty reasonable a few days after finishing your Capecitabine tablets and you should be able to get out and about during your week's break.

I was able to return to work 4 weeks after completing chemo. I wasn't fully recovered (that took several months) but at least you know that every day you will feel some improvement.

Ooh that's reassuring @trunky2 Thanks so much for replying. I understand the doctors have a duty to warn patients about the potential horrible side effects. I get that, but it's such a frightening prospect. I've recovered well from the op and I'm pretty fit with no other health issues so I'm hoping I'll be ok. I keep telling myself that it's not as if I've never experienced diarrhoea, tiredness and sickness before and hopefully it will only be temporary. Pleased to hear that you have done so well and thanks again. Jo :x::x::x:

Josianna
Quote from @Liz Blakelands:
@Josianna Hi, I didn't have the combined treatment as had chemo nearly 4 years ago and I don't think then the combined op was as common, I certainly didn't have a choice of chemo. I just had the 6 months of Capecitabine tablets. The thing with chemo is you don't know till you start on it how you will react to it. Some people sail through, others have a tough time of time.

For what it is worth, I think that given the choice I would go for the combined option. It's a shorter course, done and dusted sooner and the consultant saying it was 'the icing on the cake'. I think that is a big steer that the consultant thinks it is the best option.

Hope that helps
All the best
Liz

HI Liz, thanks for your reply. My brother who came with me asked the consultant if there were some people who sail through it and he said there were. I'm just praying I'll be one of them! He did say that if I find it too much then I can switch to just taking the one drug. I do agree with you that I should be guided by what the consultant thinks is best. Thanks again and I hope you are doing well. Jo :x::x::x:

Jane39

Hi @Josianna
Sorry that you require chemo following your surgery.
I had 8 cycles of Oxaliplatin and Capecitabine.
Everyone is different and has different side effects.
It is however very manageable and the chemo nurses are excellent at supporting us through it and dealing with any side effects that become an issue for you.

The icing on the cake and going with the oncologist’s recommendation would be in my mind - they are the experts !

Best wishes for which ever pathway you choose.
Always lots of support here for you.

Jane :x:

Josianna
Quote from @Jane39:
Hi @Josianna
Sorry that you require chemo following your surgery.
I had 8 cycles of Oxaliplatin and Capecitabine.
Everyone is different and has different side effects.
It is however very manageable and the chemo nurses are excellent at supporting us through it and dealing with any side effects that become an issue for you.

The icing on the cake and going with the oncologist’s recommendation would be in my mind - they are the experts !

Best wishes for which ever pathway you choose.
Always lots of support here for you.

Jane

Thanks Jane @Jane39 for replying. Again, that is reassuring and I appreciate that so much. You had 8 cycles!!! I think I need to just get on with it! I will be having 4 cycles which is nothing compared to what you had to have.
I hope you are doing well and thanks again.

Jo :x::x::x:

Wegwe

The combined treatment is the standard for stage 3 bowel cancer, so you will find a lot of people on the forum who have had it. The list of possible side effects you are given is impressive, but bear in mind that it is highly unlikely you will get them all. For most, it’s unpleasant but doable. Going for the combined treatment now doesn’t mean you have to finish it: if your body doesn’t tolerate it you can still switch to capecitabine monotherapy.

Josianna

Hi @Wegwe Thanks for replying. Yes, I keep telling myself that plenty of people have had it and are having it everyday. 'Unpleasant' I can tolerate and I'll have to if I want the best outcome from this treatment. The doctor did say if I find it intolerable I can switch to capecitabine monotherapy. As usual with me, it's the not knowing for sure how I'm going to feel. I'm praying I'll be able to cope with it. Thanks again for your advice. Hope you are doing well. Jo :x::x::x:

MysticLooRoll

Jo - another capox experience here. 👋

It is definitely no picnic. The best advice is take care of what you eat and drink, write stuff down (side effects, your temperature and issues you are having), get enough rest and talk to your team and the 24 hour helpline if need be.

See the thread below -Some good advice in here!
MLRx

community.bowelcanceruk.org.uk/...-2-12-21-to-include-helpful-hints

Mark McC

Hi @Josianna

Great that the tumour has been downgraded!

I had Xelox (oxaliplatin & Capecitabine) as well. I had 4 rounds then a LAR, but was recommended to have another 4 rounds before the reversal as 2 out of 11 lymph nodes showed signs of cancer cells. The decision was left to me on the adjuvant rounds as the oncologist said in his experience half did and half didn’t have the mop up. In the end I went for it as I wanted to give myself the best chance possible and not have any regrets later. I only managed 3 of the 4 rounds as I got the full smorgasbord of side effects and my platelet count was subterranean.

Good luck with whatever you decide.

Jannine

Hi @Josianna I did Capox and the best advice I can give is to mostly practical stuff, so batch cook food so that you have plenty of things to pull out the freezer if you don’t feel like cooking. Listen to your body and rest as much as possible, it really makes the chemo days more bearable. After the steroid crash you will want to sleep for England so just go with it, whatever time of day or night. Don’t take any steroids beyond 2pm, have less daily doses over a longer period as being “tired and wired” is the most strange experience. Also, take all the anti sickness meds regardless of how you feel, nausea is easier to prevent before it lands than trying to counteract it. Keep a diary or phone app of when you take your meds (you will forget) record your temperature, your mood and also what you’ve eaten. Keep in touch with the chemo nurses and no question is a silly question for them. They are on hand to offer advice and guidance, however small the issue or question you might have. If one set of meds doesn’t work or agree with you, they can change your prescription, ie stronger anti sickness meds. You can also always lower your dose of cape or oxi for the next round. As for how you’ll feel, some days like dogsh*t and other days you’ll feel able to cope. Just remember to take it one day at a time! Eat what you feel like eating and keep hydrated. Find yourself a good box set you can binge watch. Good luck with whatever choice you make :x:

Molly2me

Hi @Josianna I’m sorry your here needing advice and it’s quite a scary time getting everything in place. I think the most important thing, is to go into this with your eyes open, record things and speak openly with your team, they are there for any reason, from reassurance to medical intervention. I’m not going to lie and say it’s a walk in the park, it isn’t, it can be hard at times, but that’s what everyone is there for. Don’t think anything is too much trouble, just ask if you need something. Many have not had severe side effects and manage. The neuropathy after the drip was instant, mine affected my nose in particular, be mindful to take scarf and gloves, even if you think it’s not cold, oh and get someone to drive you to and from.
I had two infusions, one was reduced by 25% and I had 4 days of tablets after both, I’m not one of those that could complete the course.
Having never been a tv watcher, my sister got me Netflix and I’ll be forever grateful, as I couldn’t have read with the chemo brain fog. But remember we are all different, take one baby step at a time and work your way through this because fundamentally getting that bast*** thing in the bin was ultimate. Sending lots of positive hugs, it is a huge decision lovely and I wish you every ounce of strength in making the right decision for you. :x::x::x:

Josianna

HI @Molly2me thanks for replying. Your advice is much appreciated. I'm absolutely dreading it but trying to take one day at a time and hoping that the 3 months passes quickly. It certainly is a huge decision, I reckon I'll be able to handle anything after I get through this! I'm sorry to hear that you had a hard time with it, well done on getting through as much of it as you could. I hope you are doing well now. Jo :x::x::x:

Josianna
Quote from @Jannine:
Hi @Josianna I did Capox and the best advice I can give is to mostly practical stuff, so batch cook food so that you have plenty of things to pull out the freezer if you don’t feel like cooking. Listen to your body and rest as much as possible, it really makes the chemo days more bearable. After the steroid crash you will want to sleep for England so just go with it, whatever time of day or night. Don’t take any steroids beyond 2pm, have less daily doses over a longer period as being “tired and wired” is the most strange experience. Also, take all the anti sickness meds regardless of how you feel, nausea is easier to prevent before it lands than trying to counteract it. Keep a diary or phone app of when you take your meds (you will forget) record your temperature, your mood and also what you’ve eaten. Keep in touch with the chemo nurses and no question is a silly question for them. They are on hand to offer advice and guidance, however small the issue or question you might have. If one set of meds doesn’t work or agree with you, they can change your prescription, ie stronger anti sickness meds. You can also always lower your dose of cape or oxi for the next round. As for how you’ll feel, some days like dogsh*t and other days you’ll feel able to cope. Just remember to take it one day at a time! Eat what you feel like eating and keep hydrated. Find yourself a good box set you can binge watch. Good luck with whatever choice you make

Hi @Janine Thanks for your reply. Some great advice there, much appreciated. I've just bought a thermometer this morning in preparation. I know I have to go with the Capox option, it's the toughest by the sound of things but I want the best outcome. It's a horrible to think that I've got this to face for the next few months. I'm not on my own though, I have to remember that many others are going through the same thing and worse. Thanks again. Hope you are doing well now. Jo :x::x::x:

Josianna
Quote from @Mark McC:
Hi @Josianna

Great that the tumour has been downgraded!

I had Xelox (oxaliplatin & Capecitabine) as well. I had 4 rounds then a LAR, but was recommended to have another 4 rounds before the reversal as 2 out of 11 lymph nodes showed signs of cancer cells. The decision was left to me on the adjuvant rounds as the oncologist said in his experience half did and half didn’t have the mop up. In the end I went for it as I wanted to give myself the best chance possible and not have any regrets later. I only managed 3 of the 4 rounds as I got the full smorgasbord of side effects and my platelet count was subterranean.

Good luck with whatever you decide.

Hi Mark McC Thanks for your reply. Yes that was a big relief that the tumour was downgraded. Sounds like you had a rough time with that chemo, sorry to hear that. I hope you're doing better now. The doc said to me that if I couldn't handle it I could switch to just the tablets. I can understand some people choosing not to have the mop up. Why does the treatment have to be so awful??? Wil keep you all posted and thanks again. Jo :x::x::x:

Bumblebeebum

Hello @Josianna
Fabulous news the tumor has been downgraded. I had radiotherapy, then had 4 rounds of CAPOX before my surgery last year. I went in with an open mind - and just went with the flow.

Unfortunately, I did have some of the very rare side effects... So for round 3 & 4, I had the drip over a longer period and both the drip & tablets reduced by 20%. I did still have the rare side effects, but absolutely not as bad.

In all honesty, it's best just to ride the storm. Be kind to yourself. There are days were you find you've don't nothing but laze about....and that's ok! Then days where you find some energy and are able to do chores etc..

We are all unique, so....go with the flow...be kind to yourself- and imagine the drugs zapping the living hell out of the cancer.....

My treatment worked.

Good luck 🙏🏻🌈

Josianna

Hi Bumblebeebum that's so kind of you to take the time to get in touch. I really appreciate it. Yes that was some good news about the tumour being downgraded to a T2. I'm so pleased to hear your treatment worked and hopefully you are now getting on with living your life. I will certainly do my best to deal with any side effects and I'm just praying that they will be manageable. I start with the treatment a week on Tuesday. I feel like running for the hills to be honest but I know I've got to stay and face it. I'm just so terrified. I do appreciate your advice though and sending my best wishes to you. Jo :x::x::x:

drivr

Hello @Josianna, you have lots of great advice already. I am currently on my 8th round of capox and remember feeling scared to start it after reading all the information. I struggled with tiredness, neuropathy and some diarrhoea for first 2 cycles but oncologist reduced dose and it has been ok and more manageable since. If you keep a note of any side effects you get the team can adjust your dose or help with giving you medication. I find taking each day at a time, taking time for some self care and getting out for a short walk helps me feel better and the medication the chemo nurses give you helps with any side effects cropping up. Wishing you all the best

Josianna

Thanks so much @drivr for getting in touch. Much appreciated. The advice and support I've received from yourself and others has certainly helped me get through this. I'm pleased to hear that you're finding it easier to manage the side effects. It must feel lovely to be able to just go for a short walk. I'm getting the impression that the doctors start everyone off with the strongest dose which some people can handle but understandably others can't. My consultant has been honest with me and explained that I will get some severe side effects but if I'm really struggling after the 3 cycles I can have the tablets on their own for the last cycle. I suppose I have to think myself lucky that I'm only having 4 cycles. It sounds like you have done amazingly well to get through 8! Sending you very best wishes and thanks again. Jo :x::x::x: