Hi Sophie - hang on in there girl - you’re just reaching the top of a very steep hill and if you’re like me, you’ll feel so happy when you get a bit of energy back, you’ll come bounding down the other side thinking “yep, I did it, now I’m gonna really enjoy some good days and spoil myself rotten”. Its crap I know at the moment but tomorrow, you may be at that summit!
Isn’t it weired that I feel so relieved and happy to get a LITTLE bit of energy back? Friends think I’m back to ‘normal’ by the third week but I know it’s the adrenalin keeping me going, never-the-less, getting rid of those crappy se’s is cause to celebrate for a while at least.
Hi Reeb - hope you’re feeling ok now. I’m just emerging out the ‘tax war zone’, few aches left and usual tiredness but looking forward to next week, planning some shopping trips etc. Go Quavers! I’m munching on a bag as I type - I’ll be moaning I’ve put the 11 lb back on next! Must remove my nail varnish as well, nails feeling well tight and tingly.
Hope you’re feeling better soon Annie - it WILL come.
Cyber Hugs to all other ‘tax truckers’
Barneypaws (Debbie) xx
Hi everyone,
Sophie -wail, shout and scream as much as you want, this is so horrible there’s no reason why we should try to put on a brave front. We need to release all the tension in us. My OH found me in floods of tears yesterday morning, and looked totally bemused when I told him I’d been watching a 1934 film of Anne of Green Gables (just my level at present) and the ending was lovely!
Having just spent three days in bed I realise how much of a luxury it is to be able to do this - and am full of admiration for everyone here who is having to cope with this and look after a family at the same time.
As Deb says, it does seem to get easier, the first time it was day 9 before I felt vaguely normal, this time it was day 6. Does anyone else find they start to feel better very suddenly, as if a weight is lifting? So today, I was up, dressed, had friends here and then went out to lunch, feeling woozy but better. Ok, as soon as I got home, lunch went straight through but Imodium has sorted that. So take heart -better days will soon be here and you’ll appreciate them.
Take care everyone,
loula
Hi all
Just thinking about nails… I have gel nails done evry 3 weeks. They put 3 coats of varnish on and set it with uv light. It lasts really well and protects the nails very well. It saves fiddling about with ordinary varnish all the time. It is instantly dry.
It has also help to strengthen my nails which looked hideous after 6 FEC 8-(
x sarah
I’m glad to see all the positive comments, I’m feeling pretty overwhelmed after 1 of 6 tax, and my side effects have been no where near as bad as they could have.
About the nail thing I was told not to use the UV lamp things as its the UV that you’re trying to protect your nails from on TAX.
Hi all… and thank you so much for your support… it’s made a big difference knowing that I’m not the only one who has felt like this, is feeling like this, and best of all… used to feel like this but doesn’t have to do chemo any longer… (not that I’m jealous of you guys… actually, no I’m not, I’m PROUD of you).
I’m not sure I dare say it out loud, but I think I am beginning to feel considerably better… my legs are twitchy, throat still sore, but next dose of painkillers is due in half an hour, and I haven’t been clock watching… my head isn’t hurting, my back feels ok…and I actually stood up off the sofa instead of rolling off onto my hands and knees and then thinking about standing up for five minutes…
It’s all changed in the last hour… strange, heh? Now, if I can manage more than an hour’s kip tonight… tomorrow will be much better…
And yes, Val, thinking about somerset cando’s meet… will be two weeks post TAX2 at that point… so all will be well, all will be well, all will be well…
Hi All,
Sending hugs to those having a hard time- Annie and Sophie.
Tax is a total b**** ; I found myself crying quietly in my sister’s bathroom last night and feeling so sorry for myself. Good news is that, as Loula said, there is a pattern and just when you think it can’t get any worse it starts to lift.
The low is worse than with FEC though because you are so tired from the earlier regimen.
Out of the blue I even managed a walk with the kids today ( not far and my boy complained that I was slow but I left the house).
My feet are still sore and I look a fright but I am so looking forward to being back to normal for a bit at least before surgery.
I promise it gets better and easier with each one.
Sue xxx
Thank you Sue. There is just no preparing for the reality of TAX, is there? I thought I was prepared…ha, just goes to show how wrong you can be! I honestly think the last time I hurt so badly was when I was in labour… and that only lasted four hours and I thought I was strong!!! If someone had told me it would last four DAYS…
I feel like I’ve been away for days and am sorry to hear people have been having hard times (Sophie & Annie). I hope that the better days return quickly. This is such a constant mental and physical challenge…
After my 1st tax I said to my nurse that I just couldn’t go on and do it again and that I wouldn’t. After big tears and a talk I left thinking that was it, but it was cathartic just feeling I could choose not to go on; ironically this helped me go on to do the 2nd and today my 3rd and last tax. The onc reduced the dose yesterday and said I therefore didn’t need anymore gcsf (white cell injections). She said that my side effects (peripheral neuropathy, peeling feet, constant diarrhoea, etc etc) meant that she’d do this. I said I could have hugged her, it felt like a real gift! Now not sure what to expect in terms of se’s, but hoping I’m not out out for the count for the next 9/10 days. We shall see…
I’m on a steroid high tonight and can’t sleep, oh such normal 1st night after tax too.
Thank’s for the hot tip Loula about the feet and plastic bags, will give that a try!
Night everybody, hoping that days are and look brighter for so many. You are all in my thoughts.
Does anyone else have a constantly bleeding nose? The membrane in my nose is like an open wound (OH shone a torch up there for a good look) and as I’m constantly sniffing and bloody snot doesn’t really describe it, I’m beginning to think it’s not just a dry mouth but the foul taste is due to the back of my thoart getting blood coming through. It happened after the first tax and this time as well but this time it’s gone on for well over a week and doesn’t seem to be clearing up. Bit worried about infection risk etc etc
D - that was good to hear. I think I shall prob. end up doing something very similar, have a damn good wail to my oncologist (who is a lovely woman), and then just get on with it… see, the very fact I can contemplate it means I am feeling better… tho that might be because I managed an hour and a half’s sleep between 6am and 7.30am today…woo hoo, I could take on the world! Or maybe not.
The really severe bone aches ended on day seven, though I still have slightly twitchy legs today (day nine), but what I wasn’t ready for was the killer headache that plagued me all yesterday and all last night - to the point where I came downstairs at half past five and lay on the sofa with my head on a hot water bottle… I reckon as the headache lifted I went to sleep! I’m not convinced it’s gone completely… but it’s at bay for now, thank god. I’m sure that’s also down to the gcsf jabs…
One thing is for certain, I will be demanding better pain meds when I have my pre-chemo appt next time. I cannot see any reason in the world why we should have to endure this kind of pain? I am SO not a wimp, usually, but this just goes on for far too long to just endure… particularly when it stops us sleeping from a combination of steroids/pain.
Reeb - my nose is starting to get very very sore inside, and there is a little blood when I blow it, but nothing like yours sounds. On another thread, someone recommended liberally coating the inside of your nose with vaseline - part moisturiser/past barrier… and from the responses she’s had, that seems to have worked very well. So, instead of bloody noses, we can now glisten gently with vaseline and snot… Damn we’re so sexy.
Thanks Sophie - with my finger up my nose applying vaseline, farting like a full brass band and a dog glued to my head licking it all the time what’s there not to find sexy!
Hi everyone, well day 3 post tax 1, feeling ok, woke at 3am both mornings, but waiting for the aches and pains to set in, injections start tonight, great! painted my nails a dark colour as instructed by the nurse and have a good hand cream ready too.not much appetite but thats ok. 3 more tax to go before surgery. hugs to everyone x Ness
The lack of sleep is horrible isn’t it. Second tax was on Thursday so SEs not really kicked in - just the awful tiredness.
Glad you are feeling a little better Sophie. I was fortunate not to suffer as much as you. Definitely get better meds for next time or maybe a dose reduction.
Reeb I constantly had tiny bits of blood in my nose, but yours sounds worse. I think I’d ring the chemo unit if I were you.
Horace, the headaches I described seem to move around from being behind both eyes, to my jaw, to making it feel like earache… yuk, and I’m certain it’s the jabs, because yesterday’s eased off an hour before the next jab, and was back within an hour of the jab being given. It makes me laugh, reading the leaflet, where it says that the se’s can include bone pain and headaches but that these are easily treated with otc painkillers. Hmmmmmm.
Still - I hope for everyone else that they either don’t get them at all, or that paracetamol is bad ass enough to deal with it!!!
Reducing dosage… my only concern with that (much tho I like the idea) is that I’m on 100% partly because of grade/node etc but also because I’m not light… and I’ve put on well over a stone since starting chemo, so would reducing dose when I actually weigh MORE, be wise? I will discuss it tho… along with swapping back to FEC…lol…
Sorry for butting in. I don’t know if thses reasons has been mentioned but the oncs decided to reduce my dose of tax- despite my weight gain, which was over a stone and a half. The reason they wanted to do this was firstly I had one dose at full strength and that is the most important one after you have battered the cells with fec, you then hit them with tax. Secondly despite the neulasta jabs, my white cells were barely recovering for the next dose- so they knew my system was being wiped out by tax. Also the neulasta was giving me awful bone pain in every large or small bone as my bone marrow struggled to recover each time.
I worried about this for a while as I had one node involved, but after putting me through everything they had I had to trust they wouldn’t back off throw g everything at it. They just adjusted it according to my body and how it reacted. Consequently tax two and three were much, much easier and I recovered from each much more quickly.
For the pain my GP actually made a home visit and prescribed a combination of cocodamol and Voltarol which did work then she recommended taking paracetamol and ibuprofen together before the next jab ie before the pain kicked in and that meant I didnt have any real pain with subsequent treatments.
Re Neulasta and pain: I read on an American site about people taking Clarityn, a one-a-day anti-histamine, on the day of the neulasta jab and for several days afterwards. My oncologist was happy for me to do this, and it seemed to work wonders. I too had suffered from a dreadful headache, in fact the word “headache” goes nowhere near describing the absolute agony, and the fact that I ended up in tears at the pharmacy trying to get some effective pain relief, but after following the clarityn regime, the aches and pains were much reduced.
I’ve just read through all the posts and wanted to say thank you for all the useful tips and also how proud I am of you all for getting through it!
I had my last of 4 AC on Thursday and will go onto 4Tax and I’ll be honest - I’m dreading it. The last 3/4 weeks have been absolute hell as I seemed to get all the se’s in one go, so god knows what I’m in for this time and that’s before I even get started on Tax!
I had a meeting with the onc before treatment (she’s lovely) but she really downplayed the possible se’s for Tax and given how I’ve been feeling after AC 3 I wonder if she just didn’t want to alarm me unduly. I’ve been having problems with poor red cell count and needed a couple of transfusions but that now seems to be improving. However they are already worried that I have a depressed immune system, so I have another meeting with the onc before I start Tax to discuss this.
Just battening down the hatches really because I know I have to go through with it (lymph nodes involved) but I know it ain’t going to be easy!
I’ve had problems with the running nose and vaseline has really helped, also the onc prescribed me Hypromellose eye drops for my crappy eyes and although I’ve just started, it seems to be helping.
Now I’m off to prime the OH with a shopping list of things that will help me through the next stage. Again - thanks for all the tips!
