I had 4xEC and am now on Taxotere. I’ll be having my fourth cycle next week (with a possible two more depending on scan results).
I’ve found tax to be pretty tough going but the first cycle was definitely the worst. My main problem is fatigue (although the pains aren’t much fun either). I’ve found that going to bed for a couple of days helps (usually the third and fourth days after treatment). Initially I kept getting up and trying to do things, then wondered why I felt so awful (at times I can be very dim!) I’ve also had sore and tingly finger tips and a sore tongue but, for me, those weren’t too bad.
Are you about to start tax? If so, don’t forget that quite a few people have minimal SEs, it just seems to be the luck of the draw.
Well, 2nd Tax went ok this morning, now awaiting the side effects again…Not looking forward to them ! Hope they are much better this time like yours was Della!!
Wendy xx
Hi Della, just had my third EC one more to go, all I can say is I hope your right and I have minimal SE with the Tax, thanks for your reply
Hope your well?
Michelle X
Ladies, ask your onc if you can get extra steroids on a reducing dose to ride out the rough first week, it worked wonders for me and the neulasta pains which arrived as the initial course of steroids finished.
I agree with Mazzalou, paint your nails black to protect them from sunlight - helps to strengthen them too.
Sore mouths - I made melon and mint granita’s - to cool the sore mouth and get some fruit in too - check whether you could benefit from nystatin if you have oral thrush to contend with too.
Take it easy on yourselves, you will get through it…best wishes and minimal SE’s to you all
Bev x
Well my side effects just kept getting worse and worse! I went into hospital suffering with neutroplenic and a temp of 40! I was in hospital for 4 days and finally feel like im recovering only to have my 2nd lot in 3 days! Im terrified, they wont reduce the dose even though they said im on a extra 15% as it is due to my younger age so they must want me on it alot! They said they are going to include me on a clinical trial where they inject me for 5 days when my white blood cells are at their lowest and this should prevent me from going neutroplenic again…i really hope so! Ive handled FEC really well but on Tax there has been a couple of times I have honestly thought it is killing me, sorry to scare anyone.
Mazzalou how long does the effects of it last once its all completed would you say? its crazy to think this is for our good, I had to go through A&E when I was suffering and it took them 4 hours to get a vein they even tried my feet!! I felt like I was being tortured. All I can do is hope and pray this next time isnt as bad.
Hobo =I agree with everything you are saying here. My 3 FEC were a doddle in comparison to the Tax. This last week has been horrendous and I would swap back to FEC at anytime. Am dreading the last two Tax but scared that is just going to build up and be even worse - if that is possible.
K M x
I thought I would be happy to only have two left but instead I have never been so scared and if its anything like my first one I just dont know what will happen. Only hope I can think of is that now that i finally feel like I am recovering it all seems like a bad dream now so I presume thats how it will be again after its all done.
Poor you Hobo - you sound like you are really having a rough time of it. As far as finding a vein is concerned I can sympathise as the FEC made my veins pack up. Because I am on herceptin I had a portacath fitted as herceptin has to be given intravenously so you might want to consider this option if you are on herceptin. If not, you might talk to your unit about having a picc-line inserted instead.
As for the side effects of docetaxel, my eyes watered profusely and my legs ached and were swollen for a good month after my last dose, but fluid retention is more down to the steroids than the chemo, or probably a combined effect. I was very lucky and didn’t lose any of my finger nails at all, but even now nearly a year later I am still applying a clear nail varnish as herceptin makes them flaky and brittle too.
Bear with it now and you will start to feel better each day once the cumulative effect starts to wear off. As they so, no pain no gain. You will wake up one morning and realise that you are on the up and up
I am not on herceptin, I will be on tamoxifen for 5 years after this. They said as I have only (ONLY!) two more sessions they wont put a picc line in. They did say to manage the pain I could take my steroids for a few more extra days, I dont know what to do. Will taking the steroids cause more problems? apparently the reason my mouth got so sore is due to steroids not the actual chemo and i dont want that again! i feel so miserable, cant stop crying and feeling low. And its the mental issues to, i constantly think its going to come back and il never get to have children. Just scared and dont know how to prepare myself for this time.
Bless you Hobo, it’s been a rough one for you, sending you big hugs and gentle squeezes.
Have you had the neulasta injections (to stimulate white blood cells), I had this as routine on Day 2 following chemo through 3xFEC and 3xTax and was not neutropenic once, if you’ve not had it, then your ‘trial’ may benefit you next time around.
I found the extra steroids were a blessing for me, as had chronic pains from the said neulasta injections (which they wouldn’t stop, and I did ask) and helped me to ride out the worst of the first week.
Mouth, yes I suffered with that too, but that was more bearable than the pains and I took nystatin for the sore mouth, which worked for me.
It is difficult when you’re in the thick of treatment and wonder how you will get through the next one and the one after that, but you will, it may not be easy, but you will do it. A lot of people find their first TAX the worst, I really do hope you have a better one next time.
It is easy for me to say, having been there, and as you say, is not at the forefront of my mind anymore, but I completely remember how it was and how terrifying it can be at times.
It is natural to feel miserable, I hope it eases for you soon. Take each day as it comes and be kind to yourself.
Bevx
Thank you for your post, I think taking the steroids for extra days is the sensible thing to do as I was in severe pain last time and that was without the injections, they said the injections can cause bone pain so i presume its the same ones you had. Im dreading the return of the sore mouth, im taking my mouth wash and gelclair still even though my mouth is better. I will find out more tomorrow about these injections but im sure she said il have one for 5 days, this will be a nuisance getting to the hospital when il be in pan etc but if it means I dont go neutropenic again then its worth it. Im terrified of even having my bloods taken tomorrow as they always struggle, i wish i could be knocked out and woken up when its all over. i am and have been as positive as can be but i have just hit a brick wall now i think. Thank you for your advice and the hugs
Hi Hobo,
You may well be having the daily injections (filgrastim) and not sure if the neulasta (pegfilgrastim - one injection and more expensive than the dailies I think) is suitable for you or not. Ask your onc the possibility of having the one injection - I had the district nurses come to do mine at home on Day2 as couldn’t face injecting myself - it is a tiny needle though and I’m a bit of a woos, so complained quite vocally when things didn’t suit me - I’m sure my onc thought I was a pain - but no pain no gain eh??
Can you take the injections home and administer yourself rather than traipsing back to the hossy - I wouldn’t want to put myself in a hossy environment when threat of being neutropenic is on the cards (I even tried to stay away from the docs) - can district nurses come out to your home instead - might be a question worth asking when you see your onc tomorrow???
I believe pineapple works well for sore mouth too, I bought some in juice form and used it like a mouthwash, in addition to the nystatin (oral thrush) - maybe ask if you can get some of this from your onc/chemo nurses too???
Taking bloods, don’t know if you’ve tried a wheat pack/hot water bottle to open your veins before they take your bloods - hope this helps, if not, can’t really suggest anything further, but it worked for me and I didn’t have to have a picc/port inserted - even through the 6 chemo and 18 herceptins - it was touch and go a couple of times though.
Try to take comfort that you are not alone in how you are feeling, sometimes it can get quite desperate when you don’t know which way to turn or how things will go - it will be what it will be, keep posting, you may find that there is one snippet of info/advice that may make the difference to you and being in control of it, and not it controlling you.
You will get there, I remember feeling that the closer I came to the end of chemo (especially TAX), the further away it felt. Almost an unreachable point and couldn’t see the end of it when deep in the middle of having soem miserable days. Hang in there, the down days will pass and good ones are just around the corner - don’t try to stay positive all of the time, sometimes it is good to get some grief out and wallow a little from time to time - we’ve all done it.
Try planning a night in with friends/family/partner (DVD / game/ catch-up) night for one of your good days before the next chemo - it is good to have a little something to look forward to through all of this.
Take it easy
Bevx
thank you all so much for sharing your experiences - I thought I was on my own with this one! I had 3 X FEC with minimal SE, so did think I wouldn’t get away Scott free when I moved into Docetaxel. Boy was I right! Day 3 saw the leg and back pains set in, I could hardly walk. Then the shoulder and neck pains from the steroid injection. To top it all I got a water infection and had to go I hospital overnight for IV antibiotics, followed by a course of tab,eats to take at home - and of course then I got oral thrush. What more??? I am now on day 7 post chemo and feel no better. Please can anybody tell me how long this lasts between cycles?
The thought of eating makes me feel sick, probably because I know it’ll babe like eating cardboard.
sorry to be a winger, I know we’re all going through this but I feel so down, I feel like I must surely be dying. I know I’m not but I just feel so rubbish.
good luck to everyone, on a positive note we will beat this its just such a hard battle.
Ho gaynor I feel for you I really do … Yes I had all those side effects with thrush else where if you know what I mean … The mouth makes it hard to even drink !!! I’m 6 weeks post chemo and on rads now but SE still fresh … Ok by day 11 /12 you feel you have turned a corner and they reduced the dose for session 2/3 begged not to but said it wS fine so no injections which are the cause of the pain also gave me stuff for thrush which helped more than what GP gave … My very best wishes for rest of treatment… Stay strong we can beat this xxx
