Starting Oxaliplatin and Capecitibine chemo next week.

Hi maggiel and welcome to the board. Great to hear that you’re feeling so good after the op. Microscopic cells in 1 lymph node? - grr how annoying! So oxaliplatin and capecitabine is often referred to capox or xelox. The oxaliplatin is in iv form and the capecitabine in tablet form. There are lots of side effects - you may get some or you may get none and everyone reacts differently to chemo so please don’t be disheartened by what you might read - it is very doable and there are lots of remedies for any side effects you may get. So my advice/tips/warnings are

Keep a diary - you may find that you feel a bit rubbish for the first 2-3 days after then pick up a bit. If this seems to be a routine then you can plan your social life/ask for help when needed. It also acts as a reminder when the nurses ask how you’ve been and if you’ve had any side effects.

Buy a thermometer - you’ll be given a 24 hour helpline number to ring if you’re feeling unwell and they’ll want to know what your temperature is

Buy a good cream for your hands and feet - the nurses recommend Aveeno with Shea Butter which you can usually pick up for £5 at the supernarket, boots,Superdrug.

Wrap up warm and take a scarf with you - the oxaliplatin makes you react to anything below room temperature. If it’s a bit chilly when you leave the hospital then you might find your lips curling (think Elvis impersonation) and your throat can feel to close up - you might want to have a flask with a warm drink with you too.

Keep gloves handy by the fridge at home - for the first few days at least you will get a tingle when you touch anything cold. This can even be as trivial as cutlery. I got a jar of jam out of the fridge and thought I’d been electrocuted so bought a cheap pair of gloves with nobly palms and wore those.

Cold drinks will affect your throat so take the edge off them with a splash of hot water. You may also experience something called 1st bite syndrome where you open your mouth to bite something and get a sharp pain up by your ear - this quickly passes but, if you can remember, take a smaller bite to start with

Sickness - I was lucky and didn’t suffer with this but the nurses will give you tablets in case you need them. There are many different types so if the first ones don’t work then ask for another one to try.

Fatigue - again I didn’t really suffer with this but listen to your body and rest when you need to. Take little walks if you feel up to it but don’t forget to wrap up. 

If your arm feels sore from the iv then a hot water bottle or warm wheat bag can help. If your veins are a bit rubbish (like mine) then the nurses may suggest a pic line which stays in your arm throughout your treatment.

Well I think that’s everything! Hope I haven’t put you off - im hoping it’s more reassuring so if something happens then you can think, oh yes I was warned about that. Like I say you may get a few side effects or hardly any. I managed to carry on working part-time throughout mine and I think keeping busy helped me through it or I’d probably have laid on the settee all day feeling sorry for myself.

Take care and let us know how you get on

Karen x

Hi Karen, Thanks for the advice.I will keep a diary as you suggest as my memory is not that good anyway. Yes the 1 suspect lymph node was very annoying and did not make the decision to have chemo an easy one. I have been so well all the time and symptom free at diagnosis  so having chemo which might make me feel ill was a hard choice. If only we knew how we would be affected. Watch this space. Iwill let you know how I get on. Next Friday is my first session. Thanks again. 

My husband did 6 cycles of adjuvant Xelox last year. Karen did a great job describing many of the side effects. In my husband's case, the major issue has been really bad neuropathy in his hands and feet. He finished the treatment last October and it's still very painful, especially in his feet, which I massage daily with a cream containing CBD oil - that seems to help; we were told it could take a year or even longer to completely go away. He also had major change in his reaction to food, he used to be a huge coffee drinker and really likes wine and while on Xelox both tasted awful to him (but now that he's off, he can drink them again). Also, even room temperature drinks felt like drinking glass shards, so he drank a lot of tea!  No hair loss, a tiny bit of thinning but hardly noticeable.

Good luck with the treatment, in his case it did not work (another tumor grew) so now he's on Folfiri + Avastin; his CEA markers dropped a lot after the first treatment (58 to 17) so we're hopeful that this time chemo will do its job!

Claudine

Hi Claudine,

Thats a fantastic drop in his CEA . Great news for you both .

Apparently the initial downward trend is the good news they like to see . My mum’s always heads up after that either due to chemo itself or tumour death . It is doing something pretty awesome in there .

You will be getting his next move lined up in your head .

Takr care,

Court 

Thanks Court, yes, we were thrilled!  Especially since his oncologist had made a big deal preparing us for the opposite - that the CEA levels may not drop for a while, or that they may even go up.  If the trend continues, Bret may not need to do the full 12 chemo cycles, they could go in arthoscopically or with radiations to remove/zap what remains of the adrenal tumor.  He's starting to lose his beard, but we don't care!!

Cheers,

Claudine

Hi Claudine ,

It is such a relief to know treatment is working . He can set a new trend with his new look . Worth it when he knows it’s doing a powerful job . 

take care,

Court 

Hi Karen,  Well 1 week into my chemo now and am starting to feel more like my usual self. The neuropathy is something else isnt it? The weather is warming up now so that should help. I have First Bite Syndrome which I wasnt really expecting although you did warn me. Not really had sickness, just once but take anti sickness meds if I feel it coming on. Havent noticed fatigue yet. Just keeping warm and resting if I feel like it. Not sleeping too well at night but on the whole it has been do able. Thanks again for your advice.

Mags x

Hi Claudine, 1 week into my chemo and now starting to feel more normal. The first bite syndrome and the neuropathy are my main symptoms. I too am drinking a lot of tea and warm lemon squash. Now the weather is warming up Im hoping things will be better. So far I have been not too bad but understand it will get worse with more treatments. Going to a friends 60th birthday party tomorrow so that will make a nice change as last few months have been focused on hospital appointments. I hope your husband is continuing to make progress and his markers are still going down. Thanks for your help and advice.

Mags x

Sounds like a fun day, have a great time at your friend's party! 

My husband was definitely glad to be doing his chemo during warm weather months - he's always been way too hot and suddenly discovered what it's like to feel cold (like I always do!). No such problems with Folfiri, but he's losing his hair, which didn't happen at all on Xelox...  Still, a small price to pay if the treatment is working.  Next infusion for him tomorrow so fingers crossed CEA levels will have dropped even further.

Hang in there!!

XXXX Claudine

Hi my very large tumour grew whilst on oxiplatin and capecatabine, told couldn’t do any more for me so sought second opinion. Now on irebicartan and capecaatabine and paying a small fortune for avastin. The worst drug of all for me was oxiplatin  as the neuropathy was not good. Really hoping my tumour has shrunk, I am putting all my faith in this having had a terrible knock back just before Xmas. Hoping all goes well for you