Side effects of Docetaxel

Hi there

I’m new to the forums and was hoping that I might be able to get some reassurance from “those who have been there already”.

I am on 3xFEC/3xDocetaxel, plus Herceptin. I have just had my 5th treatment - yippee only 1 more to go - which was my 2nd docetaxel plus my 1st Herceptin. However I have just had the “week from hell” with regards to the chronic side effects I experienced. I knew one of the side effects would be joint pain - the first cycle didn’t seem so bad - mostly confined to back ache - but this second one the joint pains were agony - all over my body - to the extent I could hardly walk and more or less spent 5 days in bed - alternating between paracetamol & codeine to try and get some pain relief - and at night I would experience an episode of “hot shivers” like when you have flu and your body aches, your skin feels hot and tingly but you can’t stop shivering, and your temp starts going up but soon comes down again! Also experienced sore mouth (though not too bad) and rotten taste, but these were nothing compared to the pains.

Hope I don’t sound a real misery guts but it would really help to hear that what I’m experiencing is “normal” and then I can be better prepared for the fall-out from my 3rd docetaxel - I know we have to go through these things and have to ride it out but it is good knowing that I’m not alone.

I will definitely continue reading the forums for support. I wish I’d looked into them sooner. Thanks again everyone. Good luck to you all.

marym

Hi, sorry it was so bad for you, my 2nd docetaxel was a breeze compared to the 1st. Do you think its because you had the herceptin too? i have read others having a worse time of it and they have had herceptin too? just a thought. Although i do quite recognise the temp shooting up then back down again. I am having my 3rd docetaxel on wednesday, 1 more to go also.Hope it improves for you.
take care
anna

Hi marym,

I had 3 docetaxel(Tax) + herceptin then 3 FEC… slightly different order from most people as I’m on a trial… I Had all the symptoms you’ve had with my first one as I had herceptin from the first off. It got a bit better on 2nd and 3rd…

Tax is a tough chemo and mixed with herceptin I think the side effects can be stronger, I know for a fact it is supposed to increase the efficacy of the herceptin. What you are experiencing has been reported by a lot of the women on this site, make sure you mention it to your chemo nurse as they will make sure you have the right meds in place to help deal with the side effects.

Good luck with your last treatment, hope all goes well…

Best wishes
Fiona xxx

Hi Anna and Fiona

Thanks for your comments. The clinic didn’t say anything about Herceptin adding to the side effects. I had to have an injection the day after my treatment to start to boost my blood cell count early (I had a 6 day stay in hosp a couple of weeks earlier due to high temp and becoming neutropenic) and they did say that this would cause some joint pain so I’m sure this added to the intensity of it. I think we all do our research and know what to expect, but the “theory” is usually nothing like the “practical” is it! It’s just so much more reassuring hearing what other people have actually experienced and to realise that what you have gone through is “normal”.

Thanks again and all the best.

Mary xx

Hi Mary,
Congrats on last dose coming up!! I hope that it isn’t so bad this time around.
I have to say you are not on your own. I had FEC and taxotere, and I was quite sick with the first, so the first dose of tax didn’t seem too bad. Then wham!! It felt like my whole body was having contractions for 3 whole days. I tried everything, but it was hell. I mentioned it to chemo nurse, and she looked amazed, as if it had never happened to anyone before. She thought it might have been the injections given to boost white blood cells, so as my bloods were ok, she assured me that by leaving off the injection I would be fine. Not! Thank goodness that there are only 3 doses. I would never have it again. Do mention the side effects to your Dr at your post chemo check up, and if possible write it down and ask them to ‘yellow card’ them, as you should be able to report side effects for the pharmaceutical reference book ‘BNF’. It is important they listen to us, the patients who experience these dreadful side effects, and we have to let them know. I know chemo keeps many of us alive, but it is not the walk in the park they would have us believe.
Hope you get thru’ it ok,
Best wishes,
Jax

Hi Marym.

There is a mammoth thread called “Advice on Taxotere”, which has loads of useful tips. It can be found here:

breastcancercare.org.uk/forum/advice-on-taxotere-t22930.html

My wife, Janet, had her first dose last Tuesday and has also been through hell for about 3 days. I think the advice on keeping moving (easy to say, I know), and drinking lots of fluid seemed to help.

Hope your next is not so bad.

Hi Marym

I had 3 FEC then 3 docatxel, and the taxotere was by far the worst, by far. The 1st one was so bad that the onc reduced the dose by 10% for the 2nd and 3rd. 3rd was still the worst. In addition to what you describe, I had pains to my internal organs, which felt like I was being stabbed inside. I had a temp of 39. It was hideous, but I am posting this to say to you that it passes. It takes a while, but it passes.

You will feel proud of yourself for getting through taxotere, staying the course, knowing that you are thereby giving yourself the best chance. It is really hard but you will get through it, get past this stage.

Good luck and hugs

Kinden
x

Hi,

I had my 5th TAC last week, the side effects have worsened each time but you get to know how to combat them, at least to a certain extent. One of the worst for me is extreme heartburn, really bad, also oral thrush, mouth ulcers, I could go on. When I think back, when being told about the various SE’s, it was the thought of losing my hair that upset me most, God, that’s the least of it, bald as a coot now but it doesn’t hurt or cause me grief (head a bit cold). It is the accumulative tiredness, fatigue, depression that gets me down the most, life as i used to know it is a long distant memory. I know it will come back after chemo and rads but it’s hard to cope with now, everyone around me is getting on with their lives, looking forward to Xmas, I feel in a vacuum, can’t be bothered making any effort any more. Sorry, not a good day.

Hi everyone
Thanks for all your comments and advice. It really does help to know what others are experiencing and going through. I shall be discussing everything with my consultant next week but with all your support I am now ready to face my last treatment head on - just hope it won’t be too excruciating!! I shall let you know how I get on!

Jansman, thanks for the pointer to the thread on Advice on Taxatore - I did actually find this shortly after I had posted mine and I have found it extremely helpful - I’m working my way through it slowly!

Dae, I had extreme heartburn from the beginning of my chemo when on FEC and my consultant gave me Omeprazole and it has done the trick all the way through. I also know what you mean about feeling your life is in a vacuum - I feel that I’ve missed the whole summer and my life has stood still - can’t believe Xmas is just round the corner - but hang in there - life will get back to normal again.

After next week I still have 6 months of Herceptin to go, plus the Tamoxifen which, from what I’ve been reading may be a whole new story in itself! But I’ll face that in due course - one step at a time.

Take care all.
Mary xx

Hi Mary

Best of luck to you for your final treatment. I felt very guilty after my post yesterday as it was so negative and depressing, sorry about that, I was probably at my lowest point yesterday, today is a bit brighter!! Re heartburn, I have been on Omeprazole since the first cycle when I was rolling on the carpet in agony, I take up to 80mg per day over the few days when it is worst, plus extra strong Gaviscon! I do feel for you regarding the pains, I have heard of others who have had them but I have been lucky not getting them, i hope it won’t happen for you this time. Again, good luck to you for the future.

Dae x