Hi All,
I hope all went ok for you today Hatty. Glad you are off teh tax and back on FEC Sophie. Don’t feel beaten by it, you really shouldn’t. FEC was much harder for me and if someone were to tell me I needed more chemo and to take one or the other I’d have tax.
Sorry there are so many having a hard time of it. It is pretty horrible really. I feel pretty much recovered now I am on day 14. I think that the fatigue is lingering though. If you have a funny mouth it probably is thrush. I rang the chemo ward and a nurse there gave me a list of meds for me to take to my GP; flucanazole and difflam saved my bacon every time. Sore bottom is the worst though. Tax has left me with frequent nose bleeds. I even had one today while face down in the MRI scanner , not a pretty sight and fairly embarrassing.
I hope everyone is better soon.
Sue x
thanks Sue, came home from the tax and slept like a dream until this morning. Feeling ok bit sort of dopy but can manage that. Only one more tax to go after this 3 weeks so thats something to celebrate lol. Hope you all have a good sunny day.
Hope you don’t mind me jumping in; I’ve done 3 Fec and am due the first of 3Tax on March 16th. I am hoping to be one of the lucky ones as Fec was not wonderful to me, is there anything I can do to prepare for the Tax? What exactly do people do with all those frozen peas??
thanks, P xxx
Hi, You need to arm yourself with pain killers, mouthwashes etc. You may need something for diarrhoea, but wait and see how you go. Biotene toothpaste (you can get it on prescription is good when mouth is sore or dry.
There’s been a study (I’m sure there’s a link somewhere but I’ve no idea where)showing that wearing ice mitts and boots can help to stop or reduce SEs of neuropathy and nail damage. In the US and a couple of centres here they can provide ice mitts. I asked my onc about it, he was very sceptical but said do as you like. Some of us have tried putting hands/ feet in peas or dry ice things. I thought peas were easier and cheaper - I’ve used them twice and will use them again.
I haven’t had neuropathy or much nail damage - am I just lucky or did the peas help? Will never know.
Don’t know what others did, but this is what I did.
I bough 6 1kg packs of peas. For my hands I put two packs side by side in an insulated picnic bag ( or you could wrap firmly in towels) to try to keep them both firm and cold. I put one hand between the two bags of peas while chemo being started and the second one in other peas once drug going in. I found a shallow box for my feet, lined with towels, put one bag of peas on base, put my feet on it with second bag over the top of my toes. Occasionally it got a bit uncomfortable so just removed digits for a few seconds. Transported them to hosp in a cool box with plastic milk containers filled with ice (just froze water in containers in the freezer) to keep them cold.
Nobody minded, few funny looks and nurses all asking why I was doing it.
TAX is different - doesn’t make you sick. Pleasanter to be administered as just one bag of fluid - no fat syringes. For me, slightly tougher - much more tired, bit achy, horrid mouth. SEs don’t kick in for 2/3 days.
My last is March 17th.
Good luck Stella xx
elizabethtracey - huge (but gentle) hugs coming your way - in the words of my chemo ward staff nurse ‘TAX is a bitch of a drug’, and I quite agree, a little more warning over se’s wouldn’t go amiss. I think they avoid telling us too much because they think we will ‘imagine’ we have the worst se’s if we know what they are… which is a little patronising, really! It would also help if they prescribed effective pain killers BEFORE the pain kicked in. I don’t know if you have tried codeine and ibuprofen together, but apparently that can be pretty effective. Don’t suffer in silence - make sure the nurses on the ward are aware of how you are feeling, so that they can give you as much support as possible - and do come on here when you need to vent about how you feel… we all need to admit to it, really. This is a vile situation to be in, and (as xwelcomex once said to me), it’s actually pretty valid to be NOT dealing all that well with it…
Sophie xx
Just to say some of us do get through it not to badly, my first sucked it was miserable but the second was better and now on my 3rd and not to bad at all. Ive been very lucky, no muscle pain, no sore mouth, small appetite first week or so and thats a blessing. In fact after day 5 on the second round things were getting better and i even was fancying losing weight, getting fit and running. There arent always nasty SE for all keep a positive mind and think im not having them you may be lucky. Good luck.
sorry double post
Thank you Trip and Hatty and Dancing girl, forewarned is forearmed !!! Will be back to let you know how I get on… P xxx
Hi there,
Re the nail damage and peripheral neuropathy, Stella is right that keeping the hands cold during Tax should help to restrict its effects. I had my tax at the Christie just over 2 years ago, and there they have special frozen gloves for you to wear, and even change them for fresh ones straight from the freezer part way through if they begin to thaw. It was agony wearing them, but my peripheral neuropathy was fairly minimal, and I didn’t lose any finger nails either. Incidentally, I also sucked ice cubes in order to minimise the horrid mouth that Tax can give you too.
Good luck to all of you going through this now,
J x
Peachez, you will probably need to get your own peas, as I don’t think that hospital has cold mitts and gloves. I asked when I was there the other day and the chemo nurse didn’t know what I was on about!
I’ll be happy to keep you company and be your tea boy, everything else allowing. And we will DEFINITELY have cake, seeing as we missed out on it last time we met. And the time before…
had tax2 yesterday and waiting for side effects to kick in - given myself the neustaltia jab tonight and know that will bring bone aches. hot bitoene mothwash and nystatin on the go to try to anticiaptr and stsve off yukky mouth - any more tips?? oh and taking paracetamol and diclofenaac before the pains kick in - dont lnow what elses to do except sit and wait.
felt dopy and weary today but otherewise not ill
hope you lot. hugs coming your way
claire
Sophie I definitely don’t think they warn you enough - I got all my knowledge from this forum. I met a girl in hospital who had bad aches and pains - she had no idea it was a SE of TAX. I asked my onc if it was OK to take the codeine, given to me but not used, after my WLE and SNB. His reply was ‘if you need that the dose is too high!’ All very well, but we are the ones who have to suffer.
Claire - hope your SEs are not too bad
Peas…are fab! I have slight peripheral neuropathy but not as severe as some and all my finger nails are just as they were before…and I put that down to the frozen hand effect! right hand not as good as left but right is the one that cannula goes in!
I will echo all that has been said about the medical bods not telling you enough about the side effects of tax…shame on them!..I’m sure if they had a dose they would be the first with the ice mitts, ice cubes pain killers etc!!!
Peas rule!!!
Hi everyone, must admit my onc said to me " you will feel like you have been hit by a bus after a couple of days" and boy he was right. He prescribed codeine too which I did take but he didnt warn me about thrush which I think reading this forum lots of us have suffered from it. he said the side effects are like FEC but have to disagree with him there as didnt get any sickness which I did on FEC. Big hugs to all of you xxxxxxxxxxx Ness xxxxxxxxxx
LIF, I reckon you’ve hit the nail on the head - if the oncs had a dose of each of these regimes, they’d be in a much better position to describe the SEs to the people they prescribe to, and would be much more sympathetic to those who need some extra help.
I know I’m not going to have TAX but have been keeping an eye on this thread so I can understand better the difference in SEs between FEC and TAX in the general chemo threads. And I am SO grateful my nodes were clear so I don’t have to go through what you ladies have gone through. (picture a nod and respectful salute.)
CM
x
Hi again, took an executive decision last night as the aches and pains had started. Took my temp, which was normal, and then popped a couple of paracetamol before going to bed, and they kept the worst of the pains at bay resulting in a lovely sleep and a bit of a lay-in this morning. Will definitely do it again tonight if they start again.
Can I ask about thrush please? I’m a bit sore and tender down below and my tongue is looking a bit white today so I guess I’m getting it/got it. Can I wait till Monday to get some meds for it and what are you normally prescribed? It won’t do me any harm if I wait till after the weekend will it?
Flapjack xxx
Hi Flapjack, I went to the Dr’s Thurday as I had a sore mouth and was sore down below, I was given Nystatin for the oral thrush, not sure if you can get this over the counter though. I was also given some cream for down below from the GP. May be worth asking in the chemist if you dont want to wait til Monday. In my case it got quite sore very quickly. Good luck Ness x
Hi ladies
Day 2 following TAX3 yesterday which had to have reduced dose due to SE’s - painful fingers and toes, I could have cried with the pain on Weds night so ONC dr said that as it was borderline debiliating to everyday routine they would reduce the dose as it was my last one before 3xFEC. I did ask if they had increased by dose for TAX2 as I’d put on a few kg and she said it was a standard dosage that doesn’t increase with weight! After long wait in hospital (1hr 15mins) after my supposed appt time for chemo yesterday eventually got seen and got home at 7pm… totally shattered. Steriods last night and did manage 6 hours sleep in 2.x3hrs and up at 4am wide awake!! So I expect the same again tonight with the last of the steriods tonight.
I was given a list of SE’s by the nurses which did help but it wasn’t until I saw the lovely DR on Thursday she said that there is no bravery reward for putting up with any of the SE’s and to shout when things get difficult (OH asked her to repeat it for me as I was trying to cope with too much pain and not wanting to take painkillers… I did with the achey limbs after TAX2 as it was too painful!) During last week and searching on this side for some fundraising leaflets I found leaflet for SE’s and read the one for TAX - total eye opener and think we should be given a copy by the nurses!.. may be worth reading if you are starting out on TAX (I shall be reading the FEC one over the next few weeks to prepare me for that in 3 weeks time)
Had first lot of good news on a friday (had bad news every Friday in Jan from first diagnosis on Friday to being told got to have mastectomy and starting chemo!) after ultrasound Dr said that the lump had reduced by a quarter at least which is fab and that’s after 2 rounds of TAX… means the shooting pains I’ve been having means that its doing its job!! YIPPEE!!
Also found out from Onc nurses that the PICC line can come out straight after last chemo session… 9 weeks left with it in then and can then have a lovely shower, something so simple to look forward to!!
Definitely feeling more tired as the time goes on and during the third week try to do more and make the most of the last few days before being hit with the drugs again but think probably pushed too much this last week… lesson learned for the next round.
I have painted my nails dark colours but it keeps peeling so will be putting some hardasnails as a top coat aswell to try and keep it on but my nails have started to split which is making them less attractive than they were 5 weeks ago :0(
Sophie, so glad that you got things sorted out this week and like others have said we are not failures and shouldn’t feel like it as we can’t cope with SE’s we are WINNERS as we’re all gonna get through this s**t and come out the other side alot stronger and more determined to live life to the full!!!
Hope that everybody that has had chemo this week has an easier time with se’s
Liz
xxx
Love to all before the site goes down for a couple of days.
Barneypaws I’ll be thinking of you on Wednesday, we should both be having our last dose that day, so good luck girl and well done.
Reeb x
Day 3 of tax 3 and not bad at all. mouth is just going rusty lol… feet are hot but not bad ladies not bad at all.