Just to cheer you all up, I met a lovely lady in the chemo unit on thursday who was having tax (she is on 6 x tax !!!) and she had fec several years ago. She has found tax very easy and has had little or no ses…I congratulated her and we talked sheep and pigs as she is also a smallholder!
So…there are a few people who sail through it…!!!
I still have funny fingers but lovely nails and feet…due to the peas I suspect…
I too had the raw nose but its now returning to normal. eyes still watering esp when outside!
Good day today as the sun is shining and our first lamb has arrived!
Deb, thank you for that - it certainly gives me something to talk through with the onc. I wonder if the bone pain is worse if the bone marrow is more depleted - or if it’s just individual reactions? It would be interesting to know… if it’s lowest with most pain, then I WIN. (Not at all competitive, me). And also prob. not true!
Although it sounds a horrible thing to say, it’s also a relief to hear someone else describing the agony that I’ve had with bone pain and headaches… I know now it’s not just me being more of a wimp than I thought, and that it’s not an unusual reaction, particularly - which I sometimes feel the oncs try to fob this off as?
The med combos also useful to know, and the anti-histamin is really intriguing, I’ll make a note of that. If it doesn’t do any harm, it’s got to be worth a shot?
I know my chemo nurses told me to take jab last thing at night so I could sleep through the worst of it… la la la, anyone else joining me in moo moo land? Forget the bones, the headaches alone last 23 hours, I am SO glad I have only one more shot this course. And am even more unimpressed that I have seven of the bloody things!
LiF - it was you started this thread, wasn’t it? Thanks for graciously letting me turn it into the all about Sophie show…(and happy baaathday to your lamb. Sorry. Couldn’t resist)
Sophie xx
Ha ha, have just read this back and realised how many question marks I used - I’ve been camped on sofa watching Australian junior Masterchef all afternoon, think I’ve picked up the accent?!!
Day 1 post dose 3 so feeling ok about from looking like a beetroot from steroids and not sleeping well (finally got off at 1am with the help of sleeping tablet). On the nose bleed front - I’ve had the same spotting, worse on dose 1 than 2 as it had the constant nose drip with 1 as well so got the soreness (yes, vaseline did help me). My Onc did say if it was more that a tiny spot of blood to make sure I went in for blood test as it could be low platelets especially if associated with achey head too - I had the blood test earlier this week and mine were fine and this reassured me I’d be ok yesterday for dose - so my advice is “don’t grin and bear” - they were pleased I’d gone in. Am now forearmed with Fluconozole as it seems classic to have Thrush kick in on day4/5 for me in my mouth and throat (but not anus Ringworm on dose 2- hurrah!!) and this will mean I don’t have to trapse out to GPs and sit in separate room away from the bugs that are around in the surgery when I’m so low immunity. Take heart - my legs ached really badly post dose 1, only a bit post dose 2 so and thinking dose 3 might be ok - fingers crossed. Have dosed self with Lactulose as well so even the dreaded constipation is not a problem (again fingers crossed!)
Thinking of you all - I can feel my liver mets getting attached and discomfort in that area is less so am positive that the TAX is helping - I guess it’s harder to bear the SEs if you can’t see/feel the benefits. CT scan in 2 weeks will let me know what half way through the 6 doses has achieved… and hoping these SEs seem worth it… So glad some of you are feeling a bit better too - LiF pleased to know you are getting out and about - I did a 20min walk to the shops to today with coffee when I got then and the back up the hill - so am keeping going and hope that helps health generally - am wearing large spacious boots as feet do feel sensitive but not too bad.
Fran
Re bleeding nose and sores… my nose has started running slightly today, but I know it will build up and plague me over the next 10 days as will my runny eyes. Delightful!
Anyway, I’ve also found that about day 4/5 I get a scabby sore in one (always same nostril?) nostril and have applied sudacreme which has helped, so perhaps a vaseline, sudocreme combo? Spotting hasn’t increased too much, but have also been told if it does to go in or at least call to discuss it.
Taken last steroids at lunchtime, will the emotional crash happen this time?? Hopefully not, it’s been so hellish before.
Take care all, perhaps be back later, can I crawl in to bed now? Think I will. I’m going to watch a golden oldie ‘Shirley Valentine’!
Hi All,
I hope everyone is feeling a bit better this evening.
Reeb and Puff: I have a drippy bloody scabby nose also: it seems to drip constantly. I have found it gets very dry and sore in the evening- probably central heating.
Nymera: Please don’t be put off; this is the place to have a moan about tax: I was terrified of Tax from reading about side effects. I found FEC worse in many ways as at least with tax there have been more normal days in between and I have had no nausea at all.
On the painkiller front I didn’t believe my Oncologist when she said the second tax would be easier. Apparently the body copes better with subsequent neuralasta jabs because it learns how to deal with it. She was right and I did find that dosing up and alternative paracetemol and nurofen made it bearable.
Are you still taking painkillers Sophie? I found that headaches start when I stopped taking them.
Midge: my last tax was a reduced dose despite a gain of three kilos since chemo started- she was concerned about peripheral neuropathy and fingers crossed hasn’t been so bad this time round.
Any suggestions for a supper that doesn’t taste of poison?
Sue
Dear everyone. Just had one of those ‘this is it, my temperature’s up’ panics as a splitting eye-ball ache woke me up and a bloody nose. But I thought I’d have a cup of boiled water and calm down.
Silly me! Am calm now. This is such a brilliant place as I now feel completely normal (relatively that is!). Bloody noses, headaches, eye-ball aches all mentioned recently. My temperature is 38 but not over, but maybe that’s because OH piled the covers on top of me as he was hot!
Thanks everyone. But why is this dragging on? I can’t believe it. I’m the idiot that managed to go running on FEC and I can’t even leave the house.
Day 10 tomorrow; please be sunny
And Sue; no suggestions for food. I cook a meal for my family then watch, so if anyone has any idea I’d love to hear it too.
Hi All,
Keep taking the pain meds Rachel! It is hard to know when it might be ok to do without. I ache all over this afternoon. Every bone aches and I am now day 10!
Had a great morning and even managed to get a load of washing on the line. Could I bring it is when it started raining? No such luck.
I feel nothing like the young woman in my photo on here; nor do I look like her any more!
I had been doing cold cap throughout chemo and kept my hair on FEC. On tax it has thinned an awful lot and I must say is a pretty sorry sight. It is not quite thin enough for a clippers and wig but quite obviously thin and there are bare patches. I don’t know if any more will go.
Feeling a bit sorry for myself this afternoon; must be nadir and will be ok tomorrow.
On I’m being poisoned front, my OH found a tin of mullagatawny soup which tasted as expected- hurrah. I shall be buying up all the tins in the supermarket tomorrow. Maybe curry is the answer but a bit worried about spices and mucositis- maybe not such a good mix!
Sue
Sue - I had the final jab last night, had headache as expected, which has lifted within the last half hour…hooray! Right at this moment in time I do not ache…anywhere…
But have developed snotty nose and hacking cough, which I can see will do its best to keep me awake tonight instead…grrr! Have also seemingly started another period… two weeks after the last…NOOOOOO. I thought chemo would stop all that malarkey - not give me bonus rounds!!! Zoladex jabs looking more and more the way to go for me…
Hope the leg aches disappear by the end of the day and don’t come back.
I’ve found curry to be actually taste-able too - my OH made a thai green chicken curry the other night (don’t be too impressed, thank Lloyd Grossman), and I could actually tell what it was!
I’m sure it won’t be long until you look like your photo again … this BC just strips you of everything feminine doesn’t it. Well done with the cold cap though, I admire you I couldn’t face it. My hair did start regrowing after last FEC, but it seems to have stopped again sadly. Why is it I still have hairs on my legs, I’m hanging on to my eyebrows and eyelashes and under arm hair too? It’s all just so weird.
Rachel… you’ve just made my day… have checked under my arms and realised that the last stubborn hairs there have disappeared… sorry to gloat. (Gloat, gloat). My leg hairs still in situ, arm hair there but thin, most attractive fringe running along below my c-section scar but nowt else, and anywhere on my arms I had a mole with a thick black hair… still there, hanging on in for grim death.
So wierd how random it all is. My eyebrows/lashes are still in place, but head hair doesn’t seem to have grown in last month, and wondering now if TAX will see it all go… it all started coming out two weeks post first FEC, I wonder if the two week rule seems to apply to TAX too?
I’ve got my final jab tonight too. Fingers crossed for pain free night. I started my period couple of days ago and it’s very light, I was also looking forward to a few months off that, but no. Chemo has cleared up my eczema though.
Will try Lloyd Grossman thai curry with extra chillies.
Glad to know I’m not alone with all this.
Thanks ladies
Hi all - feet are peeling today, especially on my heels and round my toes and my nails feel and look awful (look wrinkly and aged?). Keep smothering them in cream and nail varnish - any other tips?
Nose has stopped bleeding (it wasn’t ‘flowing’ but it was more than spotting) replaced with eyes being really watery and ‘sticky’ and looking big, red and puffy. Bit like a goldfish. No eyelashes and one and half eyebrows - so all in all, ‘looking gooood’!
All pains gone though (day 12) - yipeee! so I’m a happy goldfish …apart from my absolute favourite, apple crumble, tasting like the bathroom rug today - that was quite traumatic. PLEASE COME BACK TASTE BUDS - I promise I won’t bombard you with the same junk I did before!
I’ve had 2 of my 3 TAX before going onto 3 FEC. Having read what you are all going through I’m sorry to say that I think I’ve got off lightly with the se’s - day 3-6 are the worst for me with the aching legs and feeling absolutely awful (had to cave in and take paracetamol with TAX2 with the aching limps which helped).
Mouth is awful with white tongue and horrible taste and feeling - although at the start of this thread some time ago somebody did mention (sorry can’t remember who) about having BIOTENE mouthwash and toothpaste (found in larger Boots stores) - it is definitely worth paying the £11 for the mouthwash as I’ve had my tastebuds back for the last 10 days … YIPPEE!!! Will be seeing if the ONC will be able to prescribe it if not I’ll be going back to Boots to get some more for next TAX 3 which is on Friday. (rinsing mouth out with disolved salt also helps)
I get thrush by about day 5/6 which my onc has prescribed antibiotics to take and I also get antibotics to take from day 8 for 7 days for when immune system is low.
I’ve got the sore feet and dry heels (coating them in Avon deep moisturising foot cream which need to get some more of) and very tender fingers… anybody else hands and feet hot?? Mine are normally freezing cold but not since starting chemo they’re warm all the time!
I was told by ONC that chemo would kill the periods… nope not yet, had period as normal and with one week off it’s started again heavier and still going strong a week later… not a happy bunny with that!!!
I’m sorry for all of you that are suffering with TAX … I’m dreading starting FEC as I’ve heard that if you are ok with one you won’t be with the other?!!
Hiya everyone
well day 5 after tax 1 , Clare Im also having 4 tax and had 4 FEC. Feeling achey all over but no worse than I did on FEC at the moment, famous last words though! Been taking ibuprofen to help with the aches, my jaw aches lots too. hugs to all having treatment this week, its horrid waiting for the side effects to happen isnt it. Ness xxxx
Sorry to moan but I hate day 4 of TAX - no steroid high, mouth going ucky, tired and achey - such a let down after first few ok days. Will have to ride through this …
take care all and thinking of those of you feeling the same
Fran
Big hugs to all of you suffering with se’s at the moment. Day 11 now, and all se’s have gone… thank god, but have managed to pick up a cold instead, so snotty and coughing, but managed EIGHT HOURS SLEEP last night, so much happier bunny today.
Liz - do not apologise for mild se’s! I would be utterly delighted if everyone on here had mild ones, I wouldn’t wish the rough ones on my worst enemy! I am totally with you on the period thing, I thought that might be one of the few bonuses to come out of chemo/hormone therapy - but nope, though they have seemed to be of shorter duration. However, having only finished last one ten days ago, was horrified to discover it seemed to have started up again yesterday evening… but seems to have stopped again now. Grrrrr. Bad enough continuing with the usual monthlies without having the odd bonus round thrown in! I had heard that if you were bad on FEC, then TAX was better, and vice versa… but it can’t be true for everyone, so am keeping it all crossed that you breeze through FEC - I think that so long as you get prescribed decent anti-nausea drugs from the get go, it can be ok. I was lucky in that I was prescribed onadestron right from the beginning, and that is one of the more effective ones.
Hi ladies
Well, 6 days post Tax 3 now, and feeling a bit brighter today. Started on antbiotics on Saturday along with the flucanazole(?) for the thrush on my tongue which in hindsight I need to start the day before to stop it affecting my taste buds so quickly. Was a total waste of space at the weekend, and I was growling at everyone. My fingers are more numb at the ends today and last night my daughter kindly varnished my fingernails in a dark purple although they are chewed down so look quite weird as I am typing, not good at all.
By the way Liz, I use Biotene and mouthwash which doesnt eliminate the skanky mouth but does improve it and I eat sherbert lemons for more of a zingy taste, oh and spicy crisps!
Still on the codeine for my stomach which makes me droopy in the afternoons but helps me sleep better at night. Hope to be off it by the end of the week.
Fran, how are your se’s doing, I hope to be able to go out later in the week and even pop in to work to see the girls, it gets so boring at home even though I cant do anything on my bad weekend.
The kids cooked dinner yesterday which was good and my OH had a day off ‘just cleaning the car’ but at least he didnt have to do any chores, bless him.
Take care all, just hope this week keep improving and the hamster face doesnt kick in to spoil it all! Any more tips for the numb fingers would be good though, apart from the peas!
Anne xxxx
I’m now 8 days post tax 1. Leg pains have gone, mouth is soooo sore but I feel so down and fed up. I’ve got no energy (which is so unlike me) even though last week when I had the leg pains, I had more get up and go.
My get up and go and got up and gone.
Anyone else felt same - just need a bit of cheering up I think!
