CAPOX decision - anyone just went with Capecitabine please?

Hi Penelope, 

I was just on capecitabine.  I had the dpd deficiency which means I’m at risk of life threatening complications with some other chemos.  They put me on half dose but for twice as long 

my main side effect was fatigue.  I didn’t get any problems with my hands or feet but I did keep everything very moisturised. 

They track your bloods once every three weeks and you’ll have a call with a nurse specialist every three weeks too.  

they dropped my side after the fourth cycle and I managed to complete 5.5 months of the six.  

There we’re also be an emergency line to call if worried.  

I hope that helps your decision. 

CerysM

Hi, I have the DPD deficiency and was started on a lower dose of Oxaloplatin and Capecetabine. I had severe side effects with the second infusion so it has been stopped. I am now just taking the tablets and I am not having any side effects at all other than a bit of tiredness. No skin problems either. As I was on a lower dose it has been increased slightly and still no problems. I will now have to take this for an extra 3 months. Take your advice from the Oncologist as they will not give it if there are any concerns about side effects. 

Hi, can I ask if you are working from home or with other people as I worry about getting an infection from the workplace. 

Thank you very much for that information, Cerys.  Were you stage 3 as well?

Thank you very much Mallorca - that sounds promising with the way they have treated you.  Were you stage 3 as well?

I am a lawyer but I can work from home as all evidence and material is digital these days.  I work from home due to the medication I already take as part of reasonable adjustments due to a disability.  In that sense, with my low neutrophil count, it stopped me worrying about rush hour travel and avoid friends and family if they become unwell.

I've done a lot of research, read a lot of books covering people's different types of treatment, conventional and non conventional.  

I am scared not to have any form of conventional treatment but too scared to have the Oxaliplatin even though I requested a lower dose and to try it.  For me, apart from all the side effects you poor people are trying to manage, to sit in that environment with already low neutrophils and everyone immunosuppressed to a degree and then having to manage on my own in a cold 1800 cottage with steep stairs away from fast assistance if needed, petrifies me more!  My cottage can't get above 18 degrees c in Winter and I already suffer with Raynauds.  It's a beautiful part of the country in Somerset where I have far reaching views and a peaceful and relaxing place to be under normal circumstances so I manage to live here. Back in the day (I am in my 50s), there was no heating growing up and we just layered up and I think people returned to this when the energy prices went up in lockdown.  That got me thinking whether people were prevented from having chemotherapy in that time or whether started treatment continued and not started got delayed as hospitals are full of sick people at the best of times.  

I have a neighbour whose brother had prostate cancer and had radiotherapy.  He became extremely unwell and was on a British Isle island somewhere and they said he was too unwell to travel.  They put him in a ward with Covid patients had he had picked up an infection but it was not Covid and that was where his life ended.  Very sad.

I was stage 3 appendix cancer with metastatic ovarian and some lymph node involvement but I am being treated as colorectal so find this forum has more information on it regarding treatment. 

Sorry to read about the additional cancer.  I find  lot of information on the treatment on this forum as well.  The hand and foot syndrome doesn't seem as common as I thought it would be which is very reassuring.

No I was stage 2 but it had pushed through the bowel wall so chemo recommended to be safe.