Winter and Chemo, capox (xelox) or folfox. Precautions, Tips, Expectations.

Yes I checked with my Chemo and Key workers.

Response; You Flu Jab is not a live virus so minimal risk. So is OK, But I am sure there are exceptions.

However, I will get my Jab on my off week from Chemo, as I am  2 weeks on, 1 week off. So that Off week is when I will take my jab, say 4 days into it, as white cells should be back up in numbers.. I hope.

Off course we are all different and other contraindications can occur... what will hapen with me I dont know... yet :o) but thats my plan as during winter (my chemo regime in winter months) flu in abundance and with 3 grand children around at schools full of bugs precuation is better than cure......

Hope all goes well....

Thanks @Frodo, good advice

I'll need to think about timing as I'm on the Cape tablets without a break (when I can tolerate them) and next infusion 5 Oct 

Cheers

6 days into my 1st FOLFOX  OK until 4 days after treatment then felt like I had been hit by a lorry I  feel I can cope with 4 days of major hangover question is is the hangover going to get worse as I carry on my journey?  What are others experiences of FOLFOX ? 

Hi, my husband is about to have cycle seven.  The seventh day is the worst for him, the nadir....but after cycle four the Last two were better so we hope for the same this time.  Good luck x 

HI there, well Im on Capex (Xelox) which is Oxypoxy (Oxaliplatin) and CapecitaBum (converted to 5-FU) as I call them. FolFox 6 (different to FolFox4) has Oxaliplatin and 5FU (or FU2! ) with Folinic acid all given by infusion.

With Xelox the Capeciteabine gets converted by the body to 5-FU over the 14day period of taking the pills. So they are similar. Efficacy is meant to be the same. But of course the Cape is in tablet form so easier to give and cheaper for the NHS. 

I do not know why there is a preference to giving Folfox or Xelox..?  OK the Xelox is pill form (for me 4+ twice a day) need to be taken for 14 days when the 5-FU infusion is given over 22hr infusion with FolFox.

Think the side effects are similar. Varying depending on dosage and individual metabolisms... But common is Fatigue, reaction to Cold like a Freezer, Pins and Needles..... 

Hope all goes well.

Regards

Hi everyone on Xelox or similar, Help!! I'm on day 9 of cape and this is my 4th cycle (due 8) and can honestly say I'm feeling worse than ever. Thought it may have been the steroids as on last 3 cycles day 1 - 5 were bad, then I felt OK but this time I feel much more tired, have constipation, awful taste in my mouth, a numb tongue, pins and needles still quite strong, terrible tinnitus, muzzy head and just generally feel like I'm having my worst hangover 24/7. Only thing I haven't got is nausea or vomiting. Is this the cumulative effect? I am struggling to drink enough fluid as can't tolerate any cold water or even cool drinks and tea/coffee all taste vile but have been drinking bovril and warm honey with lemon as know dehydration can be an issue. Strangely enough I feel quite hungry and am eating ok.  Any suggestions very welcome please.....Shona N

Hi shona, try lukewarm ginger tea or flat warm ginger beer, also get something from the hospital for the constipation.  Laxido?  X 

Hi Shona , sounds like we are on similar places, I'm struggling with cycle 4 too though cycle 2 was differently bad for me as well.  I have most of the symptoms you mention above, with so much fatigue I can't believe it.  It's do different to cycle 3 which went well.

I am eating whatever is put on front of me but have limited appetite, but I think it is important to stay nourished.  Like you I'm struggling to stay hydrated as everything except brewed coffee tastes awful, and I am only having a small amount of it due to laxative/diuretic effects.

I spoke to my key worker last week and we agreed a break from the Cape, I'm supposed to take it continuously.  I'm waiting for the symptoms to stop even though it's 4 days since my last one.

I'm definitely putting it down to cumulative effects, not just the Cape but he infusion as well.

I'm going to try the honey and lemon as that sounds appealing.

Sorry I can't offer any answers except reassurance (if that's what it is) I'm going through the same!

Oh Wow Shona, hope this passes with the advice and help..... 

I to had the Constipation real bad when I started, thought I was going to explode, due to the Nausea pills my Nurse said which you stop after 3 days unless really needed. Plus P&Ns, Cold..... and painful cannula after effects...

So I took Senna, Lactalose, plus the pills they gave me for the Constipation. It was that Bad I had to do something....As no loo for 3days. Even had a suppository's. As was desperate for relief at 3am!

The Suppository worked and helped clear things, then the other stuff could kick in, and it did! Not fun to do of course. But desperation is cause for desperate measures ;o)

Must add I was able to drink a lot. Went to wee a lot  :o) It is so important to try and drink yr needed 2ltrs a day, spread it out taking a glass of liquid as often as possible, however flavoured to help.

My Juicing I have a about a ltr which gives me nutrients and liquid with the ginger so tastes OK. Really important to flush your system out and not build up any toxicity which could contribute to the side effects, I do not know. I have only had one cycle so far so things could get tougher for me.

I also changed my diet to be more Veggi plus fiber, now with as much liquid as poss. Trying to get the 2ltrs of liquid is so important.

I also got myself some Lemons and Limes, which are not acid but actually make your body more alkaline (a good thing in many ways). Putting the squeezed juice and bits into a 500ml bottle (warmed up) and drinking that every now and then as an additional input. Not all the time, but at least every other day. I also run my tap till warm to make up a drink, as long as it is not cold my throat did not tighten up. Weird feeling when it does.

So try tepid water. I found a temperature that worked OK for me, think if  try different Temps you will find a workable temperature to make up some nice drink mixes......

Think the suggestion with Ginger / honey is good idea. I have had that nearly everyday with my juicing. Think it helps.

Try experimenting with mixes into a glass of warmed water that give you something you like without being to heavy. So that you can have one or two variations to mix up so that you can keep yr water intake up during the day. 

Hope this Helps. Best Wishes

Hi Shona sorry to hear about the challenges your battling.

I tried Ginger with honey, lemons, limes, in warm water which helped.

I have only had one cycle so far, so I am down level from where you are. I seem to suffer from the P&Ns, Cold, Constipation the most... but do try to make my 2ltrs a day drinking.

Not looking forwards to my 2nd or 3rd cycle... Not sure which drug is the culprit or all of them. If its the CapecitaBum or Oxy Poxy that is the cause... bloody things!

Best Wishes