The jabs are white cell boosters. They stimulate the bone marrow to make more cells. Not everyone gets offered or needs them on tax- in my case my white counts were low on fec so by the time I started tax the Oncologist prescribed one jab for me. Some have single jabs, others have them over several days. If you get a low white count it is worth asking for them.
I may be a bit slow but what are the jabs for that you are all talking about? I didn't get offered any with my TAX and by the sounds of them I don't think I want to.
I've been given a 10 day course of antibiotics to take.
I'll keep this short cos my fingers hurt too much at the moment.
Had a pretty good day till this evening, and I finally ventured out the house for first time in 8 days.
Debbie, you'll have a fab time at Longleat.. not been to the centre parcs there, but have done the safari park and house loads of times. We only live about half an hour away... mind you, we'd go more often if it wasn't so expensive!!! Think the mobility scooter is an ace idea, if you don't need it, you don't have to use it, but at least you know you're sorted!!!
Thank you for your response about my peeling feet. I will mention it to the onc, but think I need to be more diligent in lavishing them with moisturiser. My nails are interesting shades of yellow with streaks of red and ridges, nice. I tried deep purple nail varnish for a week, but haven't reapplied it yet!
Debbie, Longleat Centre Parks is in a wonderful location, my mum leaves about 3 miles from there. You are right Longleat itself is quite hilly, but down near the house and lakes is flatter so hopefully you'll be able to get around quite well with the mobility scooter. Enjoy your stay there! We all need things to look forward to. I'm planning a quick visit to Madrid at the end of March before I start rads!
Right, now to bed as I have to wake up early to start my steroids, oh how much do I hate taking them...
Good night everyone, I hope people rest well and that tomorrow is a better day.
I have had enough of this docetaxol mullarky!
Deryn, my feet have been peeling since tax 1 and look pretty awful- on the plus side they are unusually cheesey in normal circumstances and tax has seen an improvement in that regard. I keep piling on heel balm ( quite expensive but does the job)and socks. They feel quite hot and burned though.
My long bones ache as does my head and everything tastes of lard but this should abate soon. At least I had a reduced dose last time so it should get easier sooner.
What gets me at the moment is the difficulty I have in reading anything more than a page or two. All the magazines I read are full of beauty or clothes ads and articles are all about knitting, gardening and looking fab. I don't think I have ever looked so c***.
Well, at least there's only one way to go from complete dog's dinner. I've already done the look good feel better thing. Any suggestions?
Hi everyone, just checking in again tonight
This morning was spent in my bathroom and this afternoon in bed asleep - my, how my days just speed by! Managed soup again today and two bags of Quavers (cuts through the lard). Pains are less today (discounting tummy gripes) so think worst is over.
Just booked week at Center Parcs, Longleat on 28th March - soooo looking forward to it. I have last tax 9th March so hopefully will be over se's by then. Haven't got my dates through yet for rads but that's because I've got to have cortizone injection on frozen shoulder (bad arm) as unable to lift high enough for rads. I think there would be a 4-6 week gap anyway after last chemo (?) so this break is coming at the right time. Heard Longleat is hilly though and I just get so breathless walking so...I've hired a mobility scooter! OH says I should customize it and have a sat nav fitted as I always get lost! Downside is, massages, saunas & steamrooms are out (cos of lymphodema risk I think) but I'm hoping I can go swimming - providing my Groshong line can be taken out before I go. Can't wait!
Hope all legs are behaving themselves tonight - keep dosed up with Ibuprofen which I found helped a lot
Sorry you are all suffering. I'm full of steroids ready for second TAX tomorrow.
Sophie I found days 4 - 7 the hardest, then things started to gradually ease - except the mouth which goes on for ages it seems. I think you just want something in your mouth to try to hide the lard feeling.
Deryn, I didn't have the foot peeling thing, but I know others have. Tell your onc about it. I put my feet on frozen peas and hands between two bags of them - didn't have any foot or hand problems, but I may just have been lucky. Still have two more to go, so may not be so lucky then. Hope your feet improve soon.
Barneypaws, I lost about 10 pounds too, but managed to put about 7 back on. Digestion system went into overdrive.
Hope all those SES improve everyone and enget out and about on your good days.
Deryn - I haven't encountered this personally (still a bit early in my TAX journey!), but I have heard of other people with peeling skin on feet and hands, so it is def. an se. I can't think what might help, other than continuously moisturising to try to keep on top of it? Even lashing loads on at night, then putting a pair of cotton socks on top, that might help? Hope it's not painful.. I am dreading the thought of poss. losing fingernails or toe nails.. but have painted them all a rather fetching dark purple.. not very well, admittedly, but they are done!
Hi loula, good to know that the seperate jabs have been easier for you so far.. but poo in another way cos it looks like I may be on the 'gentle' regime and making a big old fuss! I was feeling brighter through most of today, but so very tired now that it's all getting on top of me again, feel like snivelling into my pillow. Hey ho, onwards and upwards, day seven tomorrow.. could that be a turning point?! hang on in there, we can do this (just keep swimming, just keep swimming, think I need a finding nemo fix)
Sophie, Debbie, Deryn, Reeb and everyone else suffering, I have all the same symptoms -have spent last three days in bed after Tax on Friday and only eaten two small meals since Sunday. And boy am I irritable -bawled out long suffering OH because he left the kitchen door open when preparing his meal last night and I can't stand the smell of cooking and terrified the cat by shouting, when he tried to drink my water - he's already been totally spooked by the sight of me in a turban!
After Tax1 I was given a single Neulasta jab but had an over reaction, too great a rise in white blood cells, lots of pain, temperature and spent a night in hosp. So onc has put me on 5 separate injections this time, which he says should be "a more gentle approach". Yesterday's wasn't too bad, we'll see what the others bring....
Let's hope we all have a better day tomorrow - I've heard the sun's going to shine!
Love to all,
Sorry to hear that the se's are plaguing so many. I'm due to have my 3rd (and hopefully final)tax on Friday.
I just wanted to ask if anyone else has experienced the skin peeling off their feet? Tips of my toes and balls of my feet, it just keeps on peeling off. I haven't read about this anywhere. It seems to occur when my feet have begun hurting again. My feet hate the slightest pressure on them even a quilt is too much.
I'm very impressed with Annie being able to walk to the shops! Walking further than the loo during that first week is as far as I can manage.
Take care everyone. I'm so glad I'm not alone with all of this.
Barney paws - sorry you were unwell, although welcome to lose 11 lbs it is a lot in one go, so I'm pleased you're eating again and putting it back on.
LIF - that must be so good to be able to distinguish between wine etc and vinegar. Just to be able to tell the difference between two different things would be nice all I know is that everything tastes of lard, all greasy and horrible.
Tend to eat because I know I should rather than any enjoyment, stomach also feeling ready bloated - at some point it will all come out which might make me a walking natural disaster area.
It's been a week since the second tax and although the side effects have been the same it does seem more manageable, wonder how much is just knowing that the mouth will eventually stop feeling like the bottom of a parrots cage and taking the painkillers straight away rather than 'coping'. I've been automatically given neulasta after every dose, it seems different areas/onc have different regimes.
Sophie I was told if I found myself crawling had to contact hospital so you take care.
Take care all
Sorry you are all feeling so rough....you have my utmost sympathy....
I wasn't offered the jabs so didn't have the side effects of them to contend with on top of everything else.
I still get the restless legs esp at night nearly 3 weeks after last tax. It drives me mad and keeps me awake so only sleep for a few hours. How long before it goes away?
I can report that hair is growing, mouth slowly recovering taste buds....AND I can taste difference between wine, beer, cider and vinegar!
So sorry that side effects from tax are not abating fast enough. I had a really hard time with the first one but 2nd and now 3rd have been better. I found that by day 8 I felt more human after no 1 and was back to my usual soon after.
I had just one neuralasta jab each time and managed the pain with nurofen and paractetemol alternate doses by the clock ( plus hot water bottle). My long bones still ache ( I am now day 6) but it is manageable. Sophie, my oncologist promised me that my body would not react to the jab as much on TAX 2 and 3 and she was right- it's not much consolation now for you but you may find the next two easier.
You could ask for one jab rather than many.
Hope you are feeling better soon.
Walk to Tesco, Annie?? I'm taking half an hour to get upstairs! I suppose I'm day 6 now, if dose was Friday.. I always get muddled with it. Get home safely, please!!
Debbie - I will speak firmly to onc. re jabs, and see how I get on. I know I should be 'grateful' that my NHS trust actually prescribes them before we run into problems with neutropenic sepsis, I know that's not always the case, but it IS hard to feel grateful for something that hurts so much!!! My post mx meds def. helped last night, I managed to doze for an hour or so here and there, but annoyingly, kept needing to get up and wee - which I don't think is fair at all!!
Just that tiny bit of shut eye and 'rest' has made a big diff, and I feel much brighter and less desperate this morning, but can't promise that I won't have dissolved into the pits of itsnotfair by this evening!
I am also tackling stairs on all fours.. and now and again have to confess to crawling into the bedroom once I'm at the top
Gail - thank you xxx
Pleased I found this thread! Day6 post Tax/Herceptin 1 (and the 7 day injection regime). Taste gone, bad/constant period-like pain, legs jiggling and back-ache. Why won't the sun come out - I can't stand living in this underworld of nothing. Apparently we had 41% less sun in January than average and I'm sure this doesn't help the mood. Going to walk slowly to Tesco - I may be some time!
I am well down the line now as it 2yrs since I finished chemo of which I had 3 fec and 3 tax but can remember the problems all too well. I also had injections to take to stimulate my bone marrow and had 7 each cycle and the pain they caused was as bad as the chemo. I had all the side effects of joint pain, sore raw mouth no taste finger nails and toe nails went black and fell off and had a neuropathy in my toes. I'm glad to say that the side effects disappeared failrly quickly though i do still have numb big toes and my toe nails are still discoloured ridged and are brittle. they just dont seem to grow proberly at all. I still have joint pain which the omc says is wear and tare but im sure the taxotere hasnt helped in the slightest. I can sympathise with everyone going through it now and i send love and hugs to you all. Keep your spirits up
11 lb loss was definately a boost - put 5 back on inbetween and now loosing it again. Needed to lose it as piled on weight after going through early menopause at 40 (I'm 46 now) - just hope I don't pile it on again when this is all over! x
good idea Sophie - keep well wrapped up on the sofa, I'm under a fleecy blanket on mine. Only kicked the coffee table twice with spasms so they are definately subsiding!
7 injections does seem a lot, I did 5 following 3 x FEC and I must admit the bone pains started the night I took the first injection. Onc decided to change it to the one injection when I went onto Tax and said it was stronger and gave longer protection (working on building white cells up quicker). It was also more expensive and so they normally didn't offer it out straight away. I find now that the bone pains start day 2 following the injection - (I think it is the injection that starts the pain as onc. said it's the bone marrow working hard to produce white cells). Perhaps your 7 are the same strength as my 1 (called Neulastin?) and it might be worth asking your onc about it.
Gotta try and climb the stairs in a minute which is a marathon - legs just don't want to hold me so I go up on all fours alongside my very confused labrador!
Hope you get some sleep tonight
Would quite like to lose 11lbs..... have def. noticed marked decrease in appetite but unfortunately Ben & Jerrys going down well still and helping with sore throat, so weight loss as an se, though desirable in my case (as have put on stone and a half), is not too likely. Roll on April, that's all I can say....
Hope you're feeling 100% improved tomorrow...
Thanks Debbie, hopefully I won't have too much longer of this leg crap to put up with... I think what's making me neurotic about it is I have seven lots of jabs post each TAX (not sure why I'm lucky enough to get SEVEN... ) and I have almost convinced myself that the pain won't go til the jabs stop, and the jabs won't stop until next weekend..... Hopefully I'm getting myself into a state over nothing. But chemo nurse told me that she was sure it was the jabs that caused the pain.... Ugh.
Have decided that instead of tossing and turning in bed and cursing lack of sleep I shall simply stay wrapped up in duvet on sofa until I pass out.... Not working yet, but the night is young.. 🙂
I'm day 7 now post Tax2 and I know exactly how you're feeling Sophie with the leg pain - drives me mad as can't keep them still. It's nerve pain I think and for me it was constant for about 2 days and then went to short sharp spasms that just popped up anywhere in either leg. OH not impressed with the sudden leg shooting in air followed by a shrill "OW!" every 10 minutes whilst watching the news!
I'm glad to say they've subsided today only to be replaced with ..let's just says, frequent and sudden visits to the loo! This happened to me on Tax1 and lasted for about 4 days. I lost a lot of weight (11 lbs) but was reeeally poorly at the time. I'm keeping strength up this time (and importantly potassium levels) not so much with food (as don't fancy it) but with Dioralyte! I guess today it's hitting the liver and digestive bits. Throat is sore but not as bad as last time (i.e. no thrush). No getting away from it - Tax se's can be CRAP (literally)!
Hopefully in a few days I'll feel more like me again.......just before tax3 is due (last one - yipee)!
Hope se's are as kind as they can be
Barneypaws (Debbie) xx
I'm a week post TAX 1 and still feel fairly rubbish, not really ill like some have been but really tired, thick in the head and numb in my nose, tip of tongue and tips of fingers. I'm clumsy picking up small things, and have been off food today, very unlike me.
I still haven't ventured out the house in a week, really going to try tomorrow, but I said that yesterday.
What worries me most is that my ONC wants to give me another 5 of these as EPI didn't work at all for me. I'm still not convinced this will either. I need somthing to restore my belief.
Hiya, I had first TAX last Friday.. and boy do I feel like I've been run over today! Was awake all last night with legs jiggling about violently, just could not get comfortable, and they actually hurt today.. though I think it feels worse than it really is because I am sooooo tired. If I weren't knackered, I think it would be more bearable. My back aches, my throat has been sore since half an hour after first dose, and I am not a happy bunny at the moment... but it's not as bad as childbirth, all things considered.......
Just praying I get some sleep tonight, or I'll be on the phone to the chemo ward first thing to tell them that I don't want to play anymore and can they stop the se's right this minute before I start to get hysterical...lol. Haven't really thrown dummy out of crib at them yet... but watch this space....
Still, one TAX down, only two more to go....we can do it.. after all, the alternative isn't great, is it?
hi Sarah, thanks for the tips. I was terribly sick on FEC1, couldnt move from my bed for 48 hours and sick every half an hour, had to go to the GP for an antisickness injection in my leg. They changed my antisickness drugs so by the 3rd it was much better, yep tiredness but apart from that I feel I have got off lightly. oh yes, constipation, how can I forget that, crikey that was the worst thing I think! xxxx
You may get some pins and needley type feelings in hands and feet. I have heard about ice mitts to help with those, haven't tried that myself. I have very slight pins and needles, nothing that causes me too much bother as yet.
The usual things like drinking lots of water and resting. I have my stuff weekly so my Ses should not be too severe. There will be some other ladies along soon who can give you pointers.
How were you on FEC? My nurse today (Chemo day) said that she thought FEC was a lot harsher than Tax on the basis that FEC was 3 drugs. I hadn't realised how tired FEC had made me until I stopped having it (Jan this year after 6 cycles)
Hi everyone, Im having first TAX on thursday, I have had 4 FEC now having 4 tax. Any tips for thursday from anyone please? My onc said be prepared on day 2/3, you will feel like you have been hit by a bus, his exact words! He said to take codeine, ibuprofen if needed. would appreciate and tips, thanks everyone, Ness xxx
Just back from chemo land. My nurse gave me a good tip about the bloody nose thing. Try putting a little vaseline inside the nose. It's worth a try.
Aww thanks for this Frances makes me feel better. I felt soo bad on FEC and have been so worried. Getting outside does help and as we have a very highly-strung springer spaniel, she loves it!
Good luck Rachel with SEs and my advice if they are not too good head to GP and get some help - I've usually waited too long and persevered when the doctor can often help early on. But mine have been much more manageable than the FEC ones.
Keep visualising those lovely beach walks (I have too as I live in landlocked Nottingham!). I'm taking every opportunity to get out into the fresh air to boost immunity levels - am fighting shy of shops etc (thank goodness for internet shopping) - and even short walks and having to sit down regularly does make me feel better.
take care all - hope today's an ok day for you
It is normal. I'm afraid you get lulled into a false sense of security.
You'll probably start to get SEs in next couple of days. hope yours are mild.
Hi all. I am day Tax 1 day 2 and feeling fine. Is this normal? Waiting for se's to start and had none - do they start straight away or is there a delay. THANK GOD I don't feel sick and nauseaus I was soooo ill with this on FEC.
Francesw = I'm v jealous of your walks on Filey beach, I love it there. Had many happy holidays as a child and only get to visit very occasionally when I'm up north.
Claire, it's very reassuring to hear you're feeling more human - gives me hope as I've spent the day in bed with all the usual nasties after last Friday's C+Tax 2.
Last time, I also had very sore underarm glands.
Wishing everyone well, loula
yes frances very similar am glad i am not alone more aware of it after 2nd tax feels like it stems from neck but as u say achy all over have even had funny facial sensations on and off was starting to get concerned xx
That's interesting and reassuring Sarah about your underarms - I'll see if things settle down after Tax 3 this week - good luck with number 5 and seeing the finishing line too!!
Fairy Queen - it's a weird all over sensation/pressure across the whole scalp and down to the neck and different sorts of sensitivities especially in the middle of my scalp, nothing on the front like a normal headache. Worse when I lie down and I need an extra pillow. Not so bad that I can't forget about it if I''m busy concentrating on something. Doesn't seem to respond to paracetemol but went away with start of steroids for next dose... Have you got something similar?
Funny you should mention sore glands underarm with Tax, i had that with Tax 1 and 2, but i was tender under my good arm, haven't had it since though and am going for No.5 tomorrow, only one more after that whooo whoooo!
The hospital was glad I'd reported the small bleeding in my nose and the registar said I must get in checked out and they were glad I went in today. I got the feeling they'd rather check things out for us than have us just "cope" (my usual approach to medical issues....) would probably be worth mentioning it but don't be too concerned as they said it was when it was a hankie full that I should worry and it seems that some patients don't even tell them about that... They took my bloods and had report back an hour later and then doctor came to see me so it took a morning with travel but the reassurance was worth it.
Must now concentrate on cooking the tea and not burning it!
Glad you're improving Claire.
Fran, I haven't burnt much but the pans keep boiling over and make a right mess of the hob. I put them on high to bring to the boil, but forget about them before turning them down to simmer.
I get slight bits of blood in my nose, but not reported it - should I have done?
Not had the underarm problem, but I seem to remember reading a post somewhere that someone else did.
Just back from a visit to the hospital as I'd been told at pre-chemo outpatients prior to Tax 2 that if I had any blood spotting from my nose again or weird headaches I needed to go in and have bloods checked for platelets. So over the weekend I had these problems - reassuringly the blood tests showed everything is normal so no problems and I can now treat these as normal SEs for me but they were really glad I'd gone in - and so am I as I had a near sleepless night worrying about what was going on in my head!! I was told to go back if any more that blood spotting when wiping my drippy nose on a wet day occurred (will have to stop bracing weekends away on North Yorkshire coast at this time of year to stop the drips - NO I WON'T; they are keeping be on a even keel as I so love the sea and fresh air even with windstopper jacket and waterproofs on and only OH and self and 4 others on Filey beach!!!)
So bloods ok - should be ok for third TAX on Friday - why do I feel like celebrating? I do know why! Second tax side effects were less than first dose so am hopeful and can actually feel alot of agitation in my liver where I have the mets so am hoping this is a really good sign the Tax is working. Yes, Claire - the gap between doses does seem too short and glad to know you had a weekend away too...
Sophie - my GP says my sore throat is related to the Thrush in my mouth post Tax and it does go away with the antifungal tablets he gives me - have you asked for medication?
If it makes you all feel any better - I've burnt more food since I've been on Tax than in my whole life - I start things and forget to go back to them - OH is fed up with scrubbing burnt saucepan, let along eating the burnt food! That's my chemo brain for you!!!
Does anyone have really sore underarm glands with Tax - the FEC was supposed to have "sorted out" these for me but they have felt very tender since Tax so am wondering why....
Thinking of you all with the SEs
Day 11 post TAX1 and pleased to report to anyone still strugglin post tax that i actually feel a bit more human today (was beginning to think i never would) - digestive system behaving itself, mouth ulcers/thrush almost gone and no aches and pains.
feels weird knowing next treatment is next week - the window of time feeling reasonable is definately smaller for me with TAX than FEC.
had a night away from home this weekend and it did me the power of good - not been anywhere for ages and i felt so much better for the change of scenery
and so to half term......
luv n hugs to all
Sophie - Those jabs are really a doddle aren't they. My tongue felt burnt too. Try sucking - ice lollies - not icecream - for that and the lard mouth. I found it helped.
Claire - glad the YOU is starting to emerge post TAX.
Re chemo brain - I definitely have that. I always did forget the odd word, but it's much worse now and I think of something to do, turn round and I've already forgotten! My family have commented that I'm more forgetful. Personally I think it was the FEC that caused it. I couldn't think or concentrate at all the first week after FEC - didn't have that with TAX.
When I went for my first talk with the onc, I was asked by a PhD research student if I would fill in a questionnaire once a month and also keep a diary for four months. The questionnaire is about all SEs. The diary is about brain function and clumsiness.
Have a good a day as you can. Stella xx
I have to say the posts on chemo brain have made me chuckle tonight, just think what would happen if people put us all loose together.
I tried to poison my family with out of date food thinking it was Feb 2010 not 2011.
I have to think about really simple tasks at times. Not having a clue who you're talking to on the phone is one of the most embarassing.
I'm on post chemo eating everyone out of house and home at the moment, haven't really had the lard effect so far ..
DAY 10 post TAX1 and thank goodness i am starting to emerge -my mouth has been horrendous since DAY 3 but i just have a couple of small blisters left.
digestive sytem - returning back to me
still havent got a lot of energy but i do feel so much better than i have for the rest of this week so that is good news for any of you fellow Taxers who are at the stage of wondering if you imagine the ses will never pass.
thinking of you all
Got first jab done and out of the way - was quite good fun actually, I never had a chemistry set when I was little, and I've always wanted to squirt a syringe so liquid came out of the top... but then I let OH jab me (oo-er), and I can honestly say I didn't feel a thing (hehehehe).. though the liquid did sting a little when it first went in. Am now evaluating every ache and pain I have and trying to decide whether it's just cos I walked the dog further today, or if it's the meds... have taken ibuprofen just in case....lol.
Have a funny sore feeling at back of throat, where my tonsils would be if I still had them, and sides of tongue starting to feel a little burned... and chocolate already tasting like lard. I had to leave half a bar....
I did find a proper medical essay type thing online (so it must be true) that looked into the phenomena of chemo brain, and decided that it absolutely did exist - and what's more, could linger for years. So that's me screwed, then. Basically, I was just getting over pregnancy brain (it may have taken me six years, but it's cumulative, imo, so that's my excuse), now I get zapped by chemo brain, which will prob. last twenty and by then I'll prob. be going senile. And if I'm not, I shall pretend.
Chemo brain - oh dear, nearly got me into trouble last week. Went into a shop, holding a pile of letters to post, picked up a couple of birthday cards and was half way down the street before realising I hadn't paid for them. Rushed back,apologised, paid-the assistant said she hadn't noticed then as I went out, saw a poster on the window that said "This shop is working in close collaboration with the Metropolitan Police to combat shoplifting in this area."
Then in the afternoon, went to a garden centre, added up my purchases while waiting in the queue - £15.Pleasant young man on the till said,"That'll be £17 please." "No that's not right," I said, "These are £10, these £5 and these £2 ....er, yes you're right." He gave me a poor old dear look.
Am now concentrating hard every time I go out.
Sleep well everyone.
Well you would have fits over what I said the other day....there was a story in a paper I had seen and recounting it to OH said....' well she murdered herself you know....'
Family stopped doing what they were doing and stared.....I had no idea I had said anything odd