I am on my first session of CAPOX after developing blood clots from my PICC line after 1st session of FOLFOX. I have been experiencing quite severe neuropathy side effects from the 1st infusion and though hands are improving on the 9th day ,I am still experiencing throat spasms that travel up my jaw and face together with heaviness and deep aching pains above my elbows to shoulders in both arm
after doing anything active such as washing up or getting dressed.I have to sit with my head in hands and warm face and hold my arms up - is this normal on the 9th day or us it domething I shpuld wo
y about - normally accompanied by strong hot flashes? Sorry to moan - Im sure I am just being unlucky with the side effects
Hi Lyndis and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
Have you spoken to one of the nurses on the chemo hotline about your side effects? You should have been given a 24 hour telephone number so that you can report side effects to them. They may well be able to give you something that will help.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hiya Lyndis The effects of Capox vary a lot between different people. In my case, the neuropathy was very bad in patches in my hands for each of 4 cycles but I pushed through..I had a few throat spasms but nothing as serious as yours sound. You must mention all of this to the support nurse -they are really good at varying dose/pausing treatment/ changing the drugs etc but they have to know
Hi there - thanks for your reply.Yes ,I will discuss at my next oncologist meet on Thursday and then make sure I talk through with the nurse- sort of just got on with it - feel like the helpline is for emergencies but Ill use it more if it gets worse.At least I know now what I'm dealing with!
Hi - I’m also on CAPOX and have the neuropathy but am lucky enough so far not to have had side effects like you are describing. The helpline is normally good - it’s defo not just for emergencies. I always feel like I’m bothering them but I’ve rung up about a very things that they probably think are minor so I wouldn’t feel bad about calling them. Hope the oncology team have some answers for you and can make adjustments the dose or give meds to counteract some of those effects xx
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