Starting CAPOX next week. Any tips please?

Hi, I've been on Capox for a while now and this forum helped me prepare. Gloves are required for opening the fridge and brass door handles, basically for touching anything cold such as toilet flush and metal cutlery. A snood because this shields your throat and peripheral nose. Mine always tickles and I have found that I get this reaction from varying temperatures. I have never experienced the throat spasm but think the snood helps and breathing through your nose under the snood. Warm drinks. Keep peripheral neuropathy away by keeping extremities warm. 

The first bite of food you get a pain in your jaw but this goes away quickly. All of the side effects decrease over 3 weeks which is my cycle.

Crying can make your eyeballs ache but this disappears quickly too.

It is all bearable and being prepared helps enormously.

Good luck xxxxxxx

Thank you so much.  I’m on my way out but I’ll have a good read when back.  Xxxxx

Hi, I am waiting to start my 3rd cycle of capox and I found the anxiety before I started much worse than the actual treatment. 

If your infusion is being done by canula, this can get painful towards the end, my nurse gives me a heat pad to keep on the cannula site and my arm during the treatment which helps. Some hospitals give a PICC line, mine doesn't as the infusion is every 3 weeks.

Sensitivity to the cold is the biggest side effect for me, I wear a scarf to all appointments and keep my nose and mouth covered. I haven't had any throat spasms. I need to wear gloves when going into the fridge and freezer and when going outside otherwise the neuropathy can be uncomfortable. Eating and drinking cold things is also uncomfortable so keep everything warm for about a week.

My anti sickness tablets seem to keep the nausea at bay, I also find not moving around a lot after eating helps as well - no jumping up to clean the kitchen! 

The capacetine tablets give me a bit of bowel cramping and an increase in bowel movements for a day about a week after starting to take them but a does of immodium seems to fix that quickly.

I also get "chemo bite" where the first few bites hurt my jaw but the trick is to take small bites when you first start to eat and it does ease quickly. The eyeball pain when you well up or cry is really strange as well.

With all my symptoms, they gradually improve over the course of a week. My first cycle was a bit of a shock but my second cycle was much better. My 3rd has been delayed due to low platelets but I am hoping it will be OK as well

Come back and let us know how you go, I find it really helpful to read about others experiences with treatment xx

You’ve had some great replies Bluesloth so I’m just going to add this link

 CHEMO TOP TIPS UPDATED 

Take care

Karen x

Hi, thank you so much.  I would never have thought of some of the things that you and others have recommended.  I’m utterly terrified if I’m honest.  Due to the Ocular Melanoma I only have one real eye so the eye issue could be interesting!  Very best wishes for the rest of the treatment - I hope the platelets come up soon.  I’ll keep you posted.  Xx

Thank you so much.  Two things came up with these great tips.  CBD oil - Is that helpful?  I also noticed someone saying they lost all their hair on CAPOX?  This isn’t what I was led to believe and I haven’t prepared  for this?  Would I be eligible for an NHS wig?  Xx

Thank you so much.  Lots of really helpful tips.  Two things on the list drew my attention.  CBD oil.  Is this helpful do you know?  One person says they lost their hair on CAPOX which I wasn’t led to believe was the case and I’ve not prepared.  Would I be eligible for an NHS wig do you think?  Best Wishes.  

Hi Bluesloth I have no experience of CBD oil I’m afraid so can’t comment there. 
I only know of 1 person who lost their hair on Capox - some notice a little thinning but total hair lis is not generally associated with this type of chemo. It’s a good idea to be kind to your hair during the treatment - don’t colour it and wash it gently and not too excessively. I’ve attached a link to wigs on the NHS but I wouldn’t panic if I’m honest

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/hair-loss/wigs-for-cancer-treatment

Everyone has a different experience of chemo. It’s always good to be informed but go in with an open mind - sometimes it’s reputation is worse than the actual experience

Take care

Karen x

Thank you Karen, so kind of you to reply.  Apologies for my 2 responses to you!   I’m inept!  :) Really helpful.  

Best Wishes,

Diane xx

Hi Bluesloth 

I don’t have experience of Capox as my cancer was different, but I did try CBD oil, although not while on any active treatment. Mine was very good quality and expensive, so not something from a health shop etc. I found it helpful in making me feel calmer and more relaxed, which helped with pain and sleeping. However I was not using it with any expectation of it having an effect on my cancer, which I don’t believe it would have. Also, I would have checked with my team if I were wanting to use any kind of supplement during treatment. 

Sarah xx