Oxaliplatin & capcetabine

Hi, thanks so much for taking the time to reply, its so helpful to know others feel the same. Its hard knowing how much to put up with isn't it? You want the best effect from the treatment, but i must admit the tingling particularly takes some adapting to.

Just wonder if the more we're affected by the Neuropathy now is suggestive of whether this will continue long term after the treatment stops? Anyone  had this discussion with their Oncologist?

Its so nice talking to people who understand how you feel

Hello Rosie.  Glad the gloves help. I have a consultation with my consultant on Wednesday and intend raising the neuropathy and long term prospects.

My pain on the day was so significant that I have opted for a PICC line for treatment 2 onwards.

Like some others, I am now feeling a bit more 'myself' after about day 6. Agreed it's good t share experiences and get support.

Hope you get through OK - DC

Thanks for your reply Court. It's helpful to have this support network and I am feeling somewhat beeter now with a meeting with my consultant on Wednesday. Hoping my opting for a PICC line for the next treatment will avoid the worst effects of the neuropathy at least in my left arm.

Best wishes.  DC

Hi . The picc line was the best thing I ever did! The pain in my arm when they took the tape off the cannula had me close to tears and I couldn’t bear any clothing touching my arm for several days after - I ventured into the supermarket for some salmon with 1 black glove on and my jacket sleeve pushed up looking like a poor Alvin Stardust impersonator! The line is painless to fit and the chemo nurses also take your bloods out of it. It needs to be kept dry so make sure they give you a prescription for a limbo arm which is a plastic sleeve with a rubber seal at each end to keep it dry. Keep pushing on and remember there are pills and potions for most side effects so don’t suffer in silence

Take care

Karen x

Hi rosiegirl. Please mention the neuropathy to the nurses before it gets too bad. A certain amount is normal but I kept quiet about the tingling in my feet - the oncologist said I wouldn’t manage 9 sessions and I wanted to prove her wrong - but I still have what feels like very sunburnt feet - hot with tight skin - and that’s more than 3 years down the line. I can live with it but tend to sleep with my feet stuck out the bottom of the bed! It may just be a case of lowering your doseage slightly but always worth checking.

As you’re finding, a bit of a routine develops so if you need to lie on the settee for the first few days then do and then do something nice - even if it’s just a walk round the park then home for coffee and chocolate cake - on the days you feel a little better. I found once I reached the halfway stage then the last few seemed to go quite quickly so hang on in there - you’re doing great

Take care

Karen x

Hi Karen,

Thanks for that, its just getting the balance right i suppose. The most important thing is to reduce risk of recurrence! Thanks for your kind words of support it definately helps! Xxx

• Thanks Karen. Good to know the PICC line worked for you. I have a waterproof arm protector and will ask for a prescription as back up. Side effects now subsided. I did take anti nausea tablets three times when needed earlier

It is useful to know you had similar reaction to the drug in your arm. V unpleasant and painful. Best wishes. DC (David)

I have a preexisting neuropathy, and my oncologist was worried that it would mean the side effects may persist more for me, but so far although I have noticed the effects for longer each round, so far the cold effect tingling has settled before the end of each cycle thankfully, and the preexisting neuropathy has not altered.

I have two pairs of silk mix jersey gloves from decathlon, they have finger and thumb bobbles so i can wear them using my tablet and phone, though it doesn't always work! 

My husband has just started the same and is 3 days in.  His two biggest challenges are tingling/cold fingers touching anything not warm - he can’t pick up a room-temperature plate or cutlery so he now wears gloves.  He also has pain the first two bites of anything... this has stopped him grazing on anything, needing to eat proper meals. We went out for a first mile walk today (before chemo he regularly did 3-5 miles) and despite the cold he was ok - kept a scarf over his mouth and nose constantly as he definitely does not want to get scary throat spasms.  He’s still on the steroids so we’ll see how it goes when those stop.

Hello Juppy. Your husband's experience sounds so similar to mine. Discovered on chemo day that room temp is still too low so I warm everything. To avoid the gagging with first mouthful I drink a small amount of warm water first. That symptom seems to be receding 9 days in. I am now back at 2 miles walking and even managed light DIY and leaf raking. Hope that within a week he will be feeling a bit more himself. It's not a competition so listen to your body. Best wishes. DC (David)