Oxaliplatin & capcetabine

Hi rosiegirl

Just want to welcome you to the forum .

Hopefully others currently in treatment will share with you .

My mum had that chemo combination and it did a great job . Due to her stage she actually had it on and off for two years 

She did have the tingling / pain at the infusion site , fingers , toes and had to drink everything at room temperature. She kept her linen gloves on. 

She slept a lot in the afternoons and allowed her body to dictate what it needed . It took a wee while to get on top of the nausea but I think she was also a bit put off eating as she reported it all tasted like cardboard . But once a balance was struck she did well on it . Keeping her fluids up was a bit of a priority but she does not drink a lot of fluids at the best of times . In the end she kept a bottle of water near her and sipped it gradually throughout the day .

Hope it goes well with you .

Court 

Hi my bother having the same combination. Hes just have his 3rd treatment. Hes had quite bad tingling this time. Otherwise doing well 

Hi, I’m on my fourth and hopefully last cycle and have had same side effects . I tend to feel at my worse ( nausea , no energy and very low mood ) about 4/5 days in . Oncologist said it’s coming off the steroids too quick so I’m being tapered off slowly over 6 days this time . I think my main side effect is no energy whatsoever , if I’m not in bed I’m sat on couch watching tv . I guess it’s trial and error , keep in touch with oncologist and they can change the dose to make you more comfortable . Sending a virtual hug

Hi NellyB sending you a hug take care x

I went for my results yesterday , and the tumour has gone. So treatment is horrible and I haven’t had it has servers has most on this site. My problem was overwhelming anxiety, plus feeling unwell. This site and the wonderful Macmillan nurses and support people at the other end of the phone are amazing. I’m grateful to everyone who has helped me. I have to be scanned and checked checked in three months. Hopefully you are on your last cycle love & kinness x

Hi there,

i had 8 sessions of IV OXY and CAP Tabs from AUGUST 19 to March 20.

please speak to the McMillan nurses about the nausea..........I was given nausea tabs to take before IV OXY .....EMEND I think they were called. These sorted me out much better. I hated feeling nauseous.

I had problems drinking - hated tea, coffee, water had a horrible metal taste. I started drinking Ribena in little bottles. This lasted 2 days, then I hated the taste. Diet Coke (not cold) was good for a while. I struggled to keep myself hydrated. I was taken into hospital on one occasion to rehydrate me.

get a small towel to wrap around your arm where the IV OXY goes in - this helped me enormously- I used it for the first 5 to 6 days before the tingling/pain eased. Also take hand warmers with you when you have the OXY IV.

Touching anything metal/cold was a no no.

Eat whatever you feel like - you need to keep your weight up. Your strength is important. If you want 2 trifles - eat 2 trifles.

I had issues with contapacion for first few days then diarrhoea.......i was given tablets, but decided not to take anything. 

wrap up warm after your IV OXY - cover your mouth until you get back home, otherwise you may have thorax constriction......which I had.

I slept a lot......if I was tired I went to bed. Listen to your body.

Watch how much your feet and hands tingle - make sure you liaise with oncologist with this one. Periferal neuropathy 

good luck

Nelly 1955 , that’s such good news about results . Did you have another scan after last chemo ? I have a appointment with general surgery 2 weeks after but not sure what that means . Sending a virtual hug x

Hello.  I have just joined Macmillan and this group. Day 6 on cycle 1 of Capecitabine tablets after chemo on oxaliplatin in hospital via cannula. Had a significant amount of pain, numbness, v sensitive hand lower arm for 48 hrs. Now more managable. wear cotton gloves indoors most of time. Drinks need to be just above room temp (tepid at least). Some nausea late afternoon and taking the Domperidone  30 min before evening meal helps.  Also eating smaller meals. Have a cream cracker and butter on going to bed. Slept 9 hours last night so definitely getting fatigue. Modest diahorrea but  only needed to take Loperamide once. Tingling on both hands if don't keep warm enough. Can take walks as long as I wrap up well.

I would also say that the prospect of these symptoms till the end of March is bad for my mental health - it's hard to get focused on anything other than the treatment and its side effects.  That said, the end of March is not too far off if I can try to have a more positive perspective!

I hope to continue to access this group for support.

Best wishes

I started my IV OXY and CAP tabs for 6 months starting August 2019. After every session I vowed it would be my last. I am not great with pain or feeling nauseous , in fact a very poor patient.

The great news for you all out there - if I can do 8 sessions over a 6 month period .....ANYONE CAN.

Another bit of good news - when you get past 50% of your treatments - you really start to feel you are nearly at the end.

I used to hate taking the tablets - in fact I hated the colour of them and the size.Mental thing I suppose.

People used to say I was brave - I had no choice

I found talking to people at the McMillan centre the best - I felt like I belonged to another family on my days there every 3 weeks, plus my bloods and visits to oncologist. McMillan nurses are the best. Once I get past my 1 year off chemo and this dreaded COVID 19 virus has diminished I intend to become a McMillan volunteer. 

keep going everyone - remember to fully enjoy your week off. 
paula xxxxx

dcyorkroad

Just want to welcome you to the forum .

You sound as though you have a good management plan for your side effects . 
Some of my mum’s side effects were worse some cycles and better others . Also your team won’t let you suffer if you start to struggle with them . There is lots they can do . My mum had it on and off for two years . The first year we thought she had to struggle through . The second year we got the hang of partnership with her oncology team and some adjustments made the whole thing much better . They are there for you to support you through .

All the very best ,

Court