Capox Chemo starting this week, have you had any experience with this?

Hi blue skies above As you say everyone reacts differently to chemo but I found it pretty tolerable and actually continued to work part-time in my office job throughout. I think my worst memory is the pain in my arm after the infusion and for several days after. As I was having 9 sessions they gave me a picc line after the first couple but if you do start to experience your arm tingling then ask the nurses for a heat pad. 
You may experience nausea and diarrhoea but you are given tablets to counteract this. The cold touch is probably the most common side effect so get wrapped up very warm, keep your face and mouth covered when leaving the unit and wear gloves when getting anything out of the fridge or freezer.

Theres lots of tips in the link below but please ask if there’s anything not covered?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/263084/chemo-top-tips-updated

Take care

Karen x

Hi Blue Skies,

You had the same operation as I had in September and I followed it with Capox too. I’m hoping they’ve tested you for the DPD genetic issue? And I’m hoping you haven’t got the condition? I have it unfortunately, which affected the way the drugs worked on my body and I didn’t finish the treatment.

As Karen said, the oxy part in hospital isn’t bad. The only problem is the freezing cold feeling in your arm. I would ask for a heat pad straight away if I were you, as it ranges from uncomfortable to downright hurty without one for some people. The side-effects are well-documented, but have an enormous range and I think it’s very dependent upon your own body. I had pain in my arm, where it went in for a few weeks afterwards. I also had muscle pain in my calves that felt like I’d done a lot of heavy exercise! I had the very common peripheral neuropathy, very tingly fingers when touching literally anything cold. You really do need gloves to wear indoors. I also had plastic cutlery and fluffy-lined rubber gloves for chopping vegetables! I had a couple of odd facial things, one called first -bite syndrome and another where I got shooting pains from my jaw to my eyelids when I yawned! None of these were extremely difficult to deal with and were more annoying than actually painful. 

However, my body really didn’t like the capecitabine. I don’t want to scare you with my story, but as I said I have the DPD deficiency and my body can’t break the drug down properly. It caused some pain, primarily in my heart, but it took quite a while for the team to work out what was going on. All I would say is don’t be afraid to call the chemo nurses to let them know what’s going on with you. They know if things are normal or not, as it can be quite scary when you’re at home and feel a bit weird. I left it far too long before I told them about the pain and I played it down a bit too, which was really silly of me because at first it was just put down to acid reflux. 

They stopped the chemo after my second dose because of this! However, from what I have found online and speaking to various people, this was an extremely rare event. For most people, I think the capecitabine can often upset your tummy and make you feel quite nauseous. 

Please ask a million questions of me or anyone if you need to. As I said, I don’t want to scare you, but the reality is that these are incredibly dangerous drugs and they are designed to do lots of damage! I’m sure you will find that although it’s not a very nice experience, it’s a very necessary part of the healing and survival process and I wish you all the very best with your treatment.

Kind Regards,

Nic

Hi Blue skies, 

I had 8 cycles of capox earlier this year. and apart from the day of the infusion i worked full time throughout. I found it bearable but the oxaliplatin as Karen and niknak have said can give you some odd side effects, luckily I found they went after a few days. I had nausea for a few days at the start of each cycle but I don't think I ever finished a full pack of doperamide. My nurse always put a heat pad on my arm when having the infusion.

My main side effects were neuropathy in fingers, not able to touch, eat or drink cold things, my arm would feel like it had been rolling in a bunch of nettles and it was hugely sensitive for a few days after each infusion.

I had chemo bite - when it hurts when you take the first bite of food (take small ones to begin with!) But that never lasted long for me. I also had calf cramps and my eyes would hurt if I cried. 

You also need to keep an eye on your toenails, I had some go a really funny colour and they felt like they were lifting but they never fully came off, the rest of my nails were very thick but very brittle. A good foot cream with urea helps with this. 

On 2 cycles I had throat spasms when leaving the hospital, they are scary but harmless, I sounded like a seal when breathing but I was breathing fine. As Karen said a good scarf around your mouth and nose helps and if your throat feels tight before you go get a warm drink. 

Apart from the first cycle when I had bowel cramps (which were resolved by anti diarrhoea tablets rather than buscopan). I had no other side effects from the capacitabine. I have a DPD deficiency which they checked for before treatment started so I was on half dose of capacitabine as that is all my body needed. 

Towards the end of the 8 cycles I would get really tired but on days where I could I napped and rested and that really helped.

I hope this all helps, good luck with it, those 4 cycles will fly by xx

Hello Karen, 

I'm really grateful for you taking the time to read and respond to this, thank you. 

I'm so glad you found it tolerable and were able to work, I am working full time but have taken half days off for the treatment itself. I am have ordered a few heat pads and hand warmers and am fully loaded with warm gear for those post session exists. 

I hope you are well now, thank you again.

All my best, Louise x

Hello Nic,

Thank you for taking the time to respond with all the detail, it's really helpful and I'm grateful for you being so open. 

I do not have the genetic condition but I am so sorry to hear you were diagnosed with this.

The plastic cutlery and rubber lined gloves are a brilliant shout - thank you, I would never have thought of this.

I have suffered with reflux in the past so the team are aware of this and mindful of it as we go into this. It sounds like you have had an awful time with the pain, I'm glad you spoke to them about it. It's funny how we hide things, I have felt like I am being a nuisance or a bit of a burden by mentioning things so will need to nip that in the bud especially at this crucial stage. 

I have some frankincense and peppermint that I have heard can be great (to smell) in terms of the nausea so am prepared and ready to support the traditional drugs provided to help combat these effects.

I hope that you are well into recovery and coming out on the other side now. Thank you again for your openness and for your kind words, I feel less alone going into this now.

All my best

Louise

So grateful for your feedback here Bren and for your words of encouragement, thank you.

I've bought a few heat pads now for use during treatment and at home should I need it, I think the preparation makes me feel reassured especially as I am very sensitive to the cold anyway. 

I have ordered some cream in preparation - thanks very much for the rec. I always wear toe polish (dread to think what colour the toenails are under there) so going to remove that so I can keep an eye on them. 

We spoke about the throat spasms during the intro session so prepared for that with clothing. It feels like you go through so many side effects in the intro session but there is nothing better for me personally than being able to speak to someone who has been through this first hand. 

I hope that you are way on your road to recovery now and fighting fit. 

Thanks so much for responding xx

All the best with your treatment.I was advised to get a hot drink to sip on the journey home when I had the throat spasms.it really helped.

Also do be gentle with your hair.mild shampoo and no harsh products.

Kath

Thank you so much Kath