Chemotherapy treatment - Oxaliplatin and Capecitabine

Hi MAPOR and a warm welcome to the board. I’m so glad you’ve reached out to us - we’re all at different stages of treatment and recovery so we ‘get’ how you’re feeling and will be happy to support you through this next stage.

Unfortunately everyone reacts differently to chemo so you’ll have people who have really struggled with it and then others who have found it not too bad. The oxaliplatin is the one with the most side effects and you’ll probably get some of them to a varying degree but there are pills and potions to deal with them and, if one doesn’t work, then ask the nurses to try another. They will give you antisickness tablets but tend to start you on the cheapest so if you were struggling with nausea and the tablets weren’t working then there are others to try. 

I’ve attached a link to a post that we did about chemo top tips - apologies if you’ve already  seen it

 CHEMO TOP TIPS UPDATED 

I remember someone once commenting that she was shocked when she had first bite syndrome but wasn’t too worried because she’d already seen about it so was reassured that it wasn’t anything sinister.

I think sometimes the reputation of chemo can be worrying and you may find that it’s not quite as bad as you were expecting. I continued to work part-time in an office throughout mine (apart from infusion day) as I found it to be a distraction and made life feel ‘normal.’ It’s good to keep a bit of a diary as it reminds you of any side effects that you might want to tell the nurses about and you might find a bit of a routine develops so you know which days you might feel a bit bleurgh and then pick-up on your week off and can plan something nice?

I was diagnosed stage 3 in 2016 and buddied up with a couple of ladies who were diagnosed at the same time - we’re all still ‘no evidence of disease’.

It may be tough at times but speak to the nurses if you’re struggling and often a slight reduction in dosage can make all the difference. Bear in mind as well that you are now cancer free and the tumour is in the bin - the chemo is the belt and braces.

Please let us know how you get on and feel free to ask anything that you’re worried about? The support desk is also there if you want to talk to someone in person?

Take care

Karen x

Hi Karen,

Thank you for replying so quickly to my post. I'm hoping that I don't struggle too much with the treatment but as you say I have heard of several people who have received the same treatment and each have responded differently. But I am very encouraged to hear you managed to work throughout, as I didn't think this would be possible. I have this image in my mind of chemo being very debilitating rendering any work near on impossible. 

Also, I'm obviously even more encouraged to hear that you were also at stage 3 and 7 years on are disease free!

Yes, I do try to remind myself that the tumour is out and that is a good thing. I will definitely keep you posted and am so pleased I have connected with everyone on here - it has already given me a boost after feeling a bit low today!  

Thank you for letting me know about the support desk.

Best wishes

Michael x

Just to wish you all the best.

The Chemo top tips link is great.but just bear in mind that not everyone gets every side effect and the chemo staff are always their either in person or on the phone to tweak your treatment or supply pills and potions to lessen any effects do have

Kath

Hi MAPOR. As Kareno62 says everyone reacts differently to chemotherapy. Oxaliplatin is well-known for causing cold-sensitivity although I didn’t experience it immediately. A heat pad whilst having IV Oxaliplatin helps. My own experience of Capecitabine/Oxaliplatin wasn’t good - read my profile for more information - but the important point is that your oncologist should have other options available should you suffer severe side-effects. Hopefully, that won’t be the case.

Good luck with the chemo.

Maninbath

Hi Mapor. I had this chemo regime from Sept 22 to Dec 22 . I managed the curse well. I did experience more side effects on the day of infusion, namely 1st bite syndrome, cold sensitivity and feeling a bit disorientated  but these side effects disappeared the day after. The tablets presented no issues but I did eat continually eat to keep nausea at bay. My energy levels were great up until day 3 of the 4th and final round but chemo is doable.

Thank you for your reply Manibath, much appreciated. Hopefully, as you say the side effects won't be too severe and if they are can be managed with other medication.

Best wishes

Michael

Hi Mel,

Thank you for taking the time to reply. This sounds encouraging and is also reassuring. It's good you were able to eat throughout your treatment as my perception, from what I have read, is that on chemo you don't feel like eating as much as you would normally. due to nausea etc. Did you manage to eat pretty much anything you liked?

Michael

In all honesty, from about 2 weeks post surgery, I have been able to eat everything. During chemo, my appetite went from really strong tasting food, like adding onions into mash to just bland food, then back to spicy food depending on what I fancied. I ate to combat the nausea, I never vomited and the food kept my energy levels up. I found the thought of chemo worse than the actual treatment. I was greatful to my oncologist for explaining the many possible side effects of the CAPOX treatment but I was very lucky only to suffer mild neuropathy, and for me the worse side effects were only experienced on the Oxaliplatin infusion day. Good luck with your treatment and please keep us updated on how you get on. Also happy to answer any questions you may have xx

I was also stage 3 rectal cancer which was 12cm long at first I had chemo/radiotherapy, followed by the operation and after that I had 8 sessions of oxaliplatin and capecitibine I had mine through the winter months which wasn’t great. I won’t lie to you and say it was easy because it wasn’t, I actually couldn’t have my eighth cycle of oxaliplatin because of neuropathy in my fingers and feet and some sessions got deferred for a week or two. All you have to do is keep your consultant informed and they’ll look after you. I have just had my bloods,scan and colonoscopy for my first check up and I’m still clear so it’s all worth it in the end. Stay strong and you’ll be fine .

Hi Karen it’s great to hear that you’re 7 years clear I’ve just had my first check up after all of my treatment from chemo/radiotherapy,operation and chemotherapy you don’t really get to hear this and I worry a lot about it coming back.