Chemotherapy regimes

Hi there. I have just completed a cycle of the same. The Oxaliplatin disrupts the DNA/RNA of the fast forming cancer cells and the Capecitabine destroys these cells. The Oxaliplatin carries the most side effects. Have a look at the Macmillan site for these two chemo chemicals.

The most unpleasant side effect is the lethargy and loss of appetite. They should give you steroids and anti-sickness tablets to ease the ride. 

I am being treated for stomach cancer at 52. Second chemo starts tomorrow. Stay well hydrated and eat as well as you can and ensure you keeps your bowels moving as this was an issue for me( and still is but improving) 

Cheers Phil

Hey there,

My husband had 6 cycles of that last year (Xelox) and got terrible peripheral neuropathy from Oxaliplatin, he finished the treatment mid October and it's still awful today (especially in his feet). He got other side effects (taste change, fatigue) but those didn't last. I hope you fare better and that the treatment works for you!  He's now on Folfiri + Avastin and has much fewer side effects (although he's losing his hair now, which wasn't the case last year).

Claudine

Hi Claudine

Thank you for your reply.  I still cannot decide what to do.  I have been offered IV together with tablets or just tablets alone.  There is only a 5% difference in the statistics rate.  I am concerned about getting long-term side effects like the peripheral neuropathy as I am a crafter and do intricate work and I do not want to struggle with dexterity issues.  This hobby keeps me sane as well as busy and if I go ahead I am going to need something to occupy the long days. 

I had chemotherapy 20 years ago and I am fully aware of the horrible side effects especially with food tasting awful.  I lost loads of weight last time because of this.  I think because I know what to expect, to some extent, this makes the decision even harder for me.  I always said I would never have chemo again but you have to consider all options and consider the feelings of those around you also.

Thank you for your help and I hope your husband is better on his new chemo

Iddybiddy

Yes, neuropathy is nasty. My husband plays guitar as his hobby and that's definitely been challenging (he started playing drums recently, better on the hands!). New chemo much better - plus it seems to be working (tumors are shrinking) whereas he underwent the last one for naught... That's how it is with this stupid disease. 

Good luck making your decision; not everyone gets neuropathy from Oxaliplatin anyway, and the effect is cumulative - maybe you can start with both, then drop the IV if you start getting neuropathy?

XXX Claudine

Hi Iddybiddy,

I have just completed my 2nd cycle of adjuvant Oxaliplatin plus Capecitabine.  I put a post on here when I was just starting chemo and Kareno62 kindly gave me the following information and advice which I found was spot on and I'm sure she won't mind me sharing.
"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."

My own experience was that the 1st cycle was not too good an experience as I found the tingling in my hands particularly uncomfortable and it lasted almost the whole 3 weeks. The onchologist agreed to reduce the dose of Oxalyplatin and put more fluid through with it for the 2nd cycle which made a real difference for me. So if you have any issues do talk to the onchologist as there is usually something that can be done. Everybody is different so its difficult to know how you will be affected. Best of luck and keep us updated.

Magsx

I don’t mind at all maggiel! Glad to hear that your 2nd cycle was better

Take care

Karen x

Hi Mags

Thank you so much for your comprehensive reply.  However, I have already made the decision to go with the Capecitabine tablets only and my oncologist is in agreement.  My problem is that I have had chemotherapy in the past for another type of cancer and am fully aware of the side effects and how awful I felt last time.  This lasted for the whole 9 months of treatment.  I know I may not have had all the side effects this time but I could not face the thought of feeling so poorly. 

I do appreciate you taking the time to answer my query and I hope your treatment is not so bad now.

Iddybiddy

Hi Iddybiddy. I also was prescribed adjuvent Capox & found the neuropathy with oxaliplatin awful. I'd hoped to stay on the Capecitabine tablets, but as I had 3 episodes of severe chest pain & breathlessness the oncologist has stopped all chemo as she said it would damage my heart & could cause heart attack.

So now its good to feel better, but because the tumour had gone into 1 lymph node its a bit of a worry whether the cancer will reappear elsewhere.  However, oncologist said 70% chance that because tumour & nodes removed it won't return.

Hope all goes well with your treatment.

G.Granny

Hi. I am also in my 1st cycle . Oxaliplatin effects I found I can handle with gloves and being very aware of temperature changes ( environment) and also food and drink temperatures. But 10 days into the Capecitabine I have had to stop taking it until I can see my oncologist for a review this week, as I was having increasingly painful soles of feet issues. It got to day 7 and I could hardly weight bear on them as they were so very painful. The immediate advice when i did call in on day 10 ( they had improved on days 8 and 9 , but only by me sitting down for 2 days, keeping them bare and cold) was to stop before they got worse and may blister/skin slough off etc .

To say I am upset/gutted is an understatement. I want everything to be chucked at this and now! But I was told in no uncertain terms if it got worse it wold lead to serious levels of infection and then all chemo would be stopped pending healing. So i have done as I am told.

So missing the last 4 days of tabs........I know it stays in your system for a few days but still unhappy. 

Until I see my oncologist I do not know what the alternatices are . Has anyone else had this happen to them?

Mandy 

Hi Mandy

Sorry this has happened.  No one ever knows which side effects are going to affect them.  That is why I made the decision to have tablets only.  ( I had chemotherapy in the past for another type of cancer and can vividly remember how bad I felt with that .)  We can only make a decision on the information we are presented with.  

I hope that the oncologist can offer you some sort of treatment and that the symptoms settle down a bit for you

I do not start my treatment for another 2 weeks as I am only 4 weeks post-op.  So I am making the most of the way I feel now!

Iddybiddy