Hi

Two years ago I had 4 rounds of capecitabin & oxaliplatin. Think these may be the two you have mentioned.

I had oxaliplatin intravenously followed by 2 weeks capecitabin tablets then a week off before repeating.

No hair loss, oxaliplatin I think is the one that makes you sensitive to cold. Wear gloves most of the time, to use knife & fork, touch door handles, flush toilet etc. Don't go in the freezer, I couldn't even touch a tomato out of the fridge.

However... we all have our own dosage and all react differently so your experience may be different. I wore a scarf too as they advised me to keep my neck warm. 

After my first 2 rounds I had to be reduced to 80% to help with side effects.

The capecitabine made my skin dry and tingly hands and feet.

Take it one day at a time, it's strong stuff but if it does the job we can put up with it and count the days until we finish the treatment,

Any questions ask away xx

This is really helpful thank you.  I hope you're feeling better now and are cancer free.

My ones going to be two days of chemo with a 12 day break.

Do the side effects disappear when the chemo stops or are they long lasting? I know everyone will be different but it is one of the things that worries me. I believe the side effects of the one i'm gonna have causes the cold and tingly hands and feet too.

On the 'week break' I was almost back to normal until the next lot.

O and another thing, it affected the nerves in my face on the day of the actual treatment and a few days after, not sure which drug did it though. I'd sneeze and my face would stay screwed up for a short while, really strange and the first mouthful of food would get the nerves in my teeth but again we are all different.

All side sffects finished when treatment did I think.

My most recent CT and colonoscopy were clear. Thank you x

Hi

How did it go? I remember you said 1st Feb, I was thinking of you yesterday xx

Hi

I'm on folfox at the minute and 2 others , I take a bottle home that pumps in for 46 hours

No hairloss bar the baldness I had beforehand. I had bowel bypass surgery 2 weeks before chemo started so 1 st round  I was weak and can't really say which caused that side effect.

On 3rd round now absolutely flying it. Have put back on a stone weight I lost post op. The cold thing is a bit of a discomfort alright handling things from the fridge and out for a walk the fingers will feel it. It's a milder version of pins and needles if you come in out of the cold .

The steroids they gave me are a bit a pain alright I had withdrawal symptoms on 1st round but they gave me a lower dose on the 2nd round for the 4th day to wean me off which worked  , they do effect my sleep a bit but that might be because I do very little physical activity sitting in the hospital on day one which  always would affect my sleep.

I take anti nausea tablets religiously and drink the 2litres they reccomend and haven't had a minute of sick feeling the whole month . No diarrhoea or itching skin or mouth sores but I rinse with corsodol to prevent any ulcers or sores.

I have a port and they pack the needle well if you ask . I tape the line to my body in 3 places with surgical tape , that way if you move at night it doesn't pull the port pinch you and wake you up. My bag filling with air does that lol.

You have got to get out for a walk every day if you can it lifts the spirit and helps keep muscle tone and I think kind of tells the body I'm here and I need you to work for me don't shut down. 

I wish you luck and I hope you have as good an experience as me. Careful chatting to people getting chemo in the day ward I haven't chatted to anyone who wasn't terminal and had more than 2 years left . It can depress you no end but you never get a guy who has good news they don't seem to talk

Hello Micko,

                   pleased to read your chemo is going well,and l think you have the right approach.Just be mindful that it does have a cumalative effect and the small side effects of today can ramp up with each further round of treatment.However this can be matched by your mindset ramping up in equal measure so that you are able to tolerate the additional grief.

                                                                           l got hit hard on round 4 of capox when my hands and feet decided to stop sharing their feelings with me,but it just meant that l fell over a bit more,and it was best to be standing well back when l had a hammer in my hand,but it never stopped me from using it,just that l got a lot of practice trying to hit the nail instead of everwhere around it!.l continued with treatment because l knew if it was hitting me this hard,the beggar was on the ropes and l was keen to finish the job.The feeling eventually returned to my hands,but l feel the cold these days,but thermal gloves are great,my feet have partially recovered, but after a few years the brain works out how to get the best out of them and l do not fall over now,but have just become very aware that l cannot feel the start of anything,so have just become very precise on foot placement.

                                                                                Having wrote of the small downsides,the upside is that the surgery and chemo done the business,and l am living life to the full,and my appreciation of it more than makes up for the slight inconveniences l experience,since you only have to adjust your approach to fit your new circumstances.In many ways l now work smarter and more effective.L have built a new house,erected farm buildings singlehanded,and continue to tend my livestock.

 Would l rather have not had stage four bowel cancer with spread to the liver,? for sure,but the one thing l determined to do was to make sure that the big negative was transformed into a big positive further along my journey.Now seven years on l am still working at doing so and still reaping the benefits.There were no easy fixes along the way,just keep dragging yourself out of bed,put one foot in front of the other and focus on the future, oh,and allow yourself to believe in the "what ifs".

            Good luck with the treatment,and remember if the cost of doing so is dear,promise yourself to make sure you collect the rewards for paying the price,

                                                                                           David

Thanks David , 

Would you believe I logged on here one dark night and read one of your posts. It lifted my spirits no end. I promised myself to have the same keep going attitude as you have and it seems to be working.

I've bounced back after stoma operation by just getting up and on with it. 

I was thinking the effects might be cumulative but I hope they aren't too much more. I hardly notice a thing now except the cold tingles.

My youngest is nine so I'm hoping for 10 years at least but I'll settle for 40 more if I can get it.

Thanks for the positive replies God knows how many spirits you've lifted . Michael