catalogue of side effects from docetaxol

Public Archive
1

hi everyone, this is really just for my information, i would like to compare the side effects and severity 1-10 of the side effects of docetaxol,
day 1. day of tax. o.k. just a bit tired from hospital visit.
day2. glands up feel like i have mumps, and flu like aches.No taste,
mouth becomes white, sore, and ulcers with thrush developing.

day 3. ache all over every muscle feels like i have been kicked.
absolutely no energy whatsoever, my head is completely chemo
fogged, completely depending on my oh
day4. totally unable to function, stay in bed
day5 totally unable to function, stay in bed
day 6 feeling a little bit better, able to walk a bit better
day 7 still not bothering to get washed or dressed, spending most of
my time lying on the settee
day8 start to improve a bit more, maybe get dressed, have picked up
from here usually.

would you ladies give me some idea as to whether your side effects have been similar to this, i have told my onc and my breast care nurse, my nurse said she didnt think the ses should be so bad as to stop me from doing my everyday activities, thats a laugh, i have 3 young children to look after, my onc said, well you have to have the treatment,

whilst i appreciate that, and it is difficult to determine just what side effects each individual will experience, i have had times, i am on a 6 regime of tax, just had the 5th one last week, where i really felt i was almost going to die, i dont say that lightly, and without this forum i honestly dont know what i would have done,

this experience has made me decide that when i am better i would like to do work of a nature to help other people in this situation, be it voluntary or paid i really believe there needs to be a lot more support and information about these possible side effects,

what do you ladies (and men) think? many thanks liz

2

Hi Elizabeth,

Well I was on 3 x docetaxol (following on from 3 x FEC) and I was told “you will feel like you’ve been hit by a train compared to FEC” and yep, I certainly did! Not only hit by the train but felt like it was parked on top of me for a few days after.

First cycle I was OK while still on steroids (day before, day of treatment, day after), then that evening (I also had to inject myself with something to boost the white blood cells which was also in the mix) started to ache with joint and muscle pain.

Next three days I was in a lot of pain, tried different painkillers but they didn’t work. Pain then eased off. Second week my tongue ulcers came back and couldn’t eat much or talk for a day or two. Third week was OK, just a bit tired. Glands were up.

Second cycle they upped my steroid dose so I had it for longer and tapered off which was catastrophic - it just delayed the docetaxol side effects so I ended up having those, plus steroid withdrawal plus steroid side effects over the second weekend. Just awful. Definitely the lowest point of all my treatment and I wanted to die. My mouth was metallic and like a car battery, at one point I had ulcers in my throat and I think I coughed up a bit of blood after trying to use the Difflam mouthwash which made me choke. Ached very badly. Head all over the place, eyes couldn’t focus. Glands up. All I could really do for about a week was lie on the sofa and watch mindless stuff on TV and count the minutes go by until bedtime.

Third cycle was easier as we went back to original steroid dose (over three days only) and this time the pain was controlled by painkillers. Also got horribly depressed and panicky around this time and was convinced I was going to die. However I do think a lot of this was tied in with the steroids, plus my father-in-law had just been diagnosed with inoperable throat cancer.

I think if I’d left the steroid dose alone after the first one and just put up with the pain I might have had it easier, might not.

3

Hi Liz

I found FEC worse than TAX as I had horrendous sickness with FEC. However, I’ve found TAX (finished last Monday) SE’s linger much longer. For me I’ve had sore mouth, aching limbs, restless legs at night and sore feet from day 4 onward. Each tax the SEs have been easier and I haven’t had to spend any days in bed, but I’ve felt really miserable and very depressed not wanting to do anything - even getting dress is so much of an effort - and this side effect has got worse with each cycle.

The chemo foggyness, for me, has been really bad and when my hubby said yesterday that I must look for the positive side of all this treatment (that it’s saved my life) and move on - I nearly punched his lights out! And this is sooo not like me.

I really don’t think, unless you’ve been through chemotherapy, that people understand what it does to your mental health. I think my friends just think it makes you tired and you can sleep it off - but I wake up feeling like death, not refreshed!

Thank goodness that these SEs disappear.

Interesting post - I hope this helps people.

4

I am so interested to hear that these side effects are as bad for others as they have been for me, my onc and his registrar have been absolutely no help whatsoever in respect of dealing with the psychological side of things, they are like robots prescribing the same anti sickness drugs, same anti fungal drugs, same steroids, difflam, etc etc, i have received absolutely no assurance whatsoever other than on here that these mental, physical, emotional, turmoil will ever end.

I feel distanced from every member of the medical profession, whom i always thought were supposed to be caring, compassionate, sensitive people, I have been made feel more like an animal on a production line,
I think it is absolutely disgusting, not everyone has family or friends to talk to and get re assurance from do they?

Thousands of people being diagnosed every year, and you still have people at home feeling alone, scared and vulnerable through lack of information, sympathy or understanding.

This treatment has opened my eyes big time, and the next time my onc says to me in a blase, uncaring way, “side effects, deal with them”, I simply know I am not going to be able to stop myself from saying something.

I have left his office the last twice in tears, not knowing how i would be able to endure another dose of tax poison, feeling at my wits end, knowing i must and will, but what about the people out
there that carnt and dont?..

5

Your onc sounds like an absolute b****** ! I had a bad time with taxotere but at least I got some concern from the oncology nurses and my onc.

I live alone which is probably better than having three little ones to look after. At least I was able to stay in bed without worrying about anyone else. I do hope you’re feeling a bit better by now.

If I’ve read your message properly then the next one must be the sixth and last. Let’s hope that it’s not as bad as the others and at least you can keep telling yourself - ‘this is the last one and then it will be over’.

Take care Elizabeth

Love Anthi x

6

Hi Elizabeth

Perhaps it is unusual to have such terrible side effects but you’re certainly not alone. I would have hoped that the BCN would be more aware and your Onc more caring.

I had 4 x FEC and I lost 2 stone because I was so sick. Then after surgery I had 4 x taxotere. I was like you unable to get out of bed for days, unable to hardly eat, developed terrible purple skin rashes, neutropenic sepsis once but a high temperature from day 4 every time, terrible head and muscle/bone pains. I also felt very close to death.

Quite honestly no-one seemed that interested but then I don’t know what they could do as that’s the treatment. ButI would have liked some acknowledgement of what i was going through. I was given an assortment of high dose painkillers to see me through and my chemo was reduced by 25% because of the skin rashes.

The thing is we do somehow get through it. I never once thought of giving up because I wanted to do all I could. I’m now 18 months down the line and the memory of it is fading fast.

You’ve got one more to go. Hang in there and it will soon be recovery time. I think that lack of compassion can stick with us for a long time. Try if you can to focus on those who have helped you and those like your family.

take care and a big hug, Elinda x

7

It’s amazing how oncs vary. Mine has put me on weekly tax because the side effects are more managable. I have just had dose 13 of 18. I feel heavy / wobbly legged at times and tired and sometimes low but have never lost days in bed. I shall be glad when I finish chemo though have had 6 FEC and will have the equivalent of 6 tax. The downside is hospital every week as well as weekly bloods and the fact that this regime is more expensive than the bigger dose Although having said that I don’t have any extra meds apart from rintindine and difflam. All my pre meds are given through the iv. My onc is a bit of a trail blazer bless him. He works with me and wants to avoid unnecessary ses. We are encouraged to speak up and the bcn sorts it.
X Sarah

8

HI Elizabeth tracy - yup my side effects pretty much like yours, and I had similarly no help with psychological side of things - I honestly think they think its up to the nurses to deal with all that stuff, AND I think if you haven’t been through it it is pretty much impossible to contemplate how difficult it all is. I fed back to the hosp about lack of psychological help being really bad aspect of the care for me.
Well done for doing your chemo tho,
bw Nicola

9

hi ladies, thank you all for your input, i am so intrigued if thats the correct word to use,

the nurses on the chemo ward i attend range from i would say a lot younger than me, 2 of them chinese that i carnt understand anyway, and the only one i have ever had any sense from i have only seen once, and on that occassion i reacted and had to be picked up off the floor, thank god she was there!!!

I still believe the side effects are too easily dismissed, the treatment is vile, and the mental damage it does in a lot of cases people will never be the same again,

i suppose it is like anything until you experience it first hand you carnt appreciate it fully.

no one will ever change my opinion of the vast majority of medical bodies, i am only speaking from my personal experience,

4 weeks i have been waiting now for a simple report yes or no answers from my onc, i have even had to get on the phone and chase that up myself, well at least he has put pen to paper whether its in my favour or not we will see hes probably just put “side effects”,

sorry ladies, but i am so peed off with the injustice of it all, i never used to feel so bitter, i suppose i should feel humble and thankful, i am thankful but not humble,

anyway i will be making my experiences known at the hospital, and how i have been made to feel, i know there are loads of people who feel exactly the same as me, i have heard them in the waiting area, maybe just not strong enough to do anything about it, or just glad to have their treatment and get back to living again…

10

Hi, interesting thread. I am due my last tax on friday.
I find that i am fuzzy from when i have it, up until the sunday evening when i have learnt to take strong painkillers and heat bags and sleep. I am in serious pain for a few days, but force myself to get up and shower, it seems to ease the aches. I find that i have no energy, feel like i am wearing diving boots!! Get very emotional too. Have been sick with tax too, and my stomach is always gurgling. I have had very few good days, i really have to push myself to do things.
I have found that my onc and the chemo nurses dont understand or down play the se’s. I was told that tax wasnt as ‘bad’ as ec!! If it wasnt for this forum i wouldve been totally in the dark. All the info i was given was that stuff ‘may’ happen, yet everyone on here seems to have all the se’s to varying degree’s. I feel like they have all the drugs to throw at ec, mainly for the sickness yet very little to treat the se’s of tax.
Hope you get the answers you are looking for.
kerry xxx

11

hi kerry,

its all played down isnt it?

The more i speak to people on here the more i know it is,
anyway ALL THE VERY BEST TO YOU for Friday,

after that: get those diving boots and kick the bitch into touch!!!

Well done for getting through it, i wont be too far behind you.

will be thinking of you, lots of love liz x

12

I had very similar side effects from decetaxol as is described here. I don’t think anyone who has not been there can really have any understanding of the horror of it all. I don’t use that word lightly as I truly beleived that I was going through the horror of treatment with a terrible effect on me, not only physically but mentally and psychologically too. I finished 3 FEC and 3 Decetaxol on 15th Feb and, yes it is doable, but it is extremely difficult. I don’t think it should ever be underestimated how our mental health suffers during such harsh treatment.
The very best to all still going through this horrendous treatment, hang on in there and you will see the light at the end of the tunnel.
J

13

Hi ladies, I have only had 1 tax so far, next poisoning is tomorrow, have to say my chemo support nurses have been brilliant, if I have rung the ward for advice they always contact the following day to check all is ok, I was ok days 1 and 2 just a bit achey but I am having Herceptin too so could be that, days 3 and 4 I was vomiting badly but a change of sick meds sorted that . Days 5,to 7 just very fatigued but managed a good walk outside with the dogs most days which helped a lot and also helped with the restless legs at night, days 9 and 10 I was quite poorly and was told to go to hospital, and was admitted for neutropenic sepsis, 4 days of iv antibiotics and felt great, the last week I have been almost human, still a little tired and the hairs falling out big time but generally been able to have a good week.
I thought I would not be able to go through another cycle but I think looking at some of your experiences I have been lucky so far.
I hope the next ones going to be better, but we have to endure this awful poison to kill the cancer cells ,
Good luck to all having Tax and hope the SEs are gentle on you.
Jean xx

14

Hi Liz, I had almost identical SEs to you, although I was expecting it as my onc told me that the combination of Tax and the Neulasta jab would make me feel as though I’d been flattened. It’s not known as being hit by the Tax truck for nothing!

It wasn’t until I looked on here (I think it might have been you that mentioned it in another thread Liz) that I came across any mention of the mumps feeling though. I’d had the aching neck on FEC but it was worse on Tax, and also my saliva glands werre very painful whenever I tried to eat or drink anything. Even water tasted nasty and seemed to dry out my mouth but I found tonic water a bit better.

I have never felt so ill and as if my body didn’t belong to me in my life.

I went back to work a week and a half after FEC 2 & 3 and tried to do it after Tax 1 but it was a big mistake - I struggled though 4 days (I only work part time anyway) then gave up (the chemo nurse told me off for getting too tired when I went to have my Hickman flushed - I had my wrist well and truly smacked!) and have now been signed off until after my rads have finished at the end of June.

My legs still feel heavy and ache if I stretch them or climb the stairs and I have the drippiest nose in the whole wide world (with a bit of blood as well but my platelets are just about OK so they’re happy with that). I really should buy shares in Kleenex. Other than that I feel almost human after three weeks - just ready for another poisoning session!

My onc has been wonderful and very sympathetic and has changed my meds each time depending on my SEs. She’s prescribed me Beconase for tomorrow to try to help the nose and eyes so we’ll see if that works.

I still don’t have my taste buds back fully and I;ve got Tax 2 tomorrow so I suspect that’s it for flavours until three weeks after Tax 3!

Jane xxx

15

Hi Alto, I have had the drippy nose too, and it was bleeding when I blew it, I was wondering if there was anything I could take to help with it, I will try Beconase see if it works,I also had the ‘mumps’ feeling ,in fact all my lymph glands hurt at one point , I am having the neulasta jab too this time, I was told it makes your body ache , great !
The chemo nurse told me the SEs would be minimal , I will wait and see.
Good luck with tax 2 tomorrow I will be having mine too.
Jean

16

Jean - I’ve finished tax now but for each dose my nose bled, the membrane just constantly oozed. I put vaseline up there which did help and my gp perscribed naseptin which did the same as the vaseline but had an antiseptic element. It always bled for about 10 days and I got my wrist slapped for not getting it checked out the first time as they wanted to check my platelet count due to the constant bleeding.

What amazes me is that there are so many women having these side effects that don’t get mentioned in the literature so when I’ve had to discuss them with my gp it’s like an unknown and they don’t know what to do. Think the se info needs updating

Reeb

17

Reeb you have got it in one, what side effect literature, i got a piece of a4 paper with “what you may experience” written on it,

now more to the truth what they should have put was you may feel like you are about to pass away,

I am sorry, but it is true, i was absolutely petrified, i have never experienced anything like it in my whole life, and nobody warned me.

they must know, and they must sit people down and warn them properly,

that was my whole point of starting this thread, and i intend to persue this further, for the sake of other people who are going to be given this poison,

now here is the 50 million dollar question, everyone refers to tax as poison, thats fair enough, everyone is assuming it is killing cancerous cells, fair enough again, but what evidence have we got?
ok obviously the drug has had clinical trials, and must have been proven somewhere to work, i never asked,

DID ANY OF US???

and i would like to know, if it is doing so much damage which it obviously is, to our bodies, how do we know our bodies can really get over it, and repair themselves,

i am not being negative, trust me, but i have so many questions, which i should have asked but didnt, i have had 5 of a 6 regime now, and find myself wondering whether i have done the right thing

how long has the drug been around, what is its success rate, how long does it take to fully recover, if at all, i am doubting that a body can take such a battering and recover from it,

i am going to go on the internet and get some answers, do some research and put my mind at rest, if i can,

in the meantime i am going to make sure i let the hospital know, and not be speaking to chemotherapy nurses, who, when i have told them the ses i have been experiencing have looked me straight in the eye and said “oh i have never heard anyone complain of that before”
things like, acid in your throat so bad you carnt swallow, aching so bad you carnt bear to touch your skin, unable to walk, feeling like you have gone insane, this isnt acceptable you feel like you are a fraud almost,

they need to get people on the wards that have actually experienced the treatment first hand, they need to talk openly about it,and explain to people they arent out of the ordinary,

the hospital i attend in birmingham, has a healer on the ward, ok, i am not knocking him, and thats fair enough BUT and it is a big but,

in opinion, for what it is worth, they ought to have someone on the ward talking about treatments, side effects, reassuring people who are at their wits end, if someone wants spiritual healing they surely would persue this for themselves.

priorities seem all wrong, i found myself reassuring a lady much senior to myself because she was crying, she felt so ill, she didnt know how she was going to be able to manage to feed her cat!!!
she had got herself into such a state, she hadnt even thought of asking her neighbour to nip round, it sounds pathetic but it wasnt to her. and nurses were looking at her and just walking by.

i must shut up now, because i will never stop otherwise, have i gone mad, i just feel so passionately that people need proper information, help and support and not just be administered the drug and left to get on with it.

keep posting liz x

18

Liz, agree with a lot of what you have said.
Reeb - i got a few sheets of printout at from the macmillan site at my chemo meeting, that was all.
Am sure i have read somewhere that tax was used to treat another cancer and then was found to be effective at treating bc.
I was asked to reassure a lady that tax wasnt as bad as ec, i was open and honest and told her the truth.
We cant expect the chemo nurses to understand how it feels, unless you have had it how can you? But they can, and should be empathetic. If it wasnt for this site i would have thought that i was going mad and imagining my se’s! Unfortunately not everyone had access to this type of support so your suggestion of having someone who has experienced it first hand is a good one, but then if you knew how horrid it was going to be would you have gone through with it? Maybe that why they underplay the se’s?? Who knows?
The thing that worries me about the long term effects of tax is the aches and pains that, from reading posts on this site, seem to last a while. How do i know whats tax ache or something that needs checking out?
kerry xxxx

19

Hi
Good point about being able to weed out tax aches from something more sinister mrs blue. I too got the macmillan print out. However, I reckon I am lucky with our team as they will talk about the ses and encourage us not to suffer in silence. Only have 5 more pouisons to go now, and am hoping that the neuropathy won’t get any worse. Its tolerable at the moment. Haevy leg syndome is helped a bit by exercise but I have to work hard at getting myself galvanised into action.
x sarah

20

Liz,

I fully agree with the feeling of being poisoned on tax, which I didn’t have on FEC (and I had forgotten my puffy feet and my constantly dripping nose and runny eyes). Also even though my hospital was very good they were just so busy in the chemosuite I couldn’t help feeling like I was like a chicken in a battery farm at times.

However, I finished tax on 1st October (so six months ago), and although I then went on to radiotherapy and Herceptin which have had their own problems, I did start to feel better after a few weeks and certainly by Christmas I was pretty good, just got tired quite quickly.

I think part of the problem is that the psychological damage done (certainly to me) is that you feel you will never be well again, but you will, really. Every minute that goes by is another minute towards the end of it.

Big big hugs to all still on this x