Hi Peter, thank you for sharing. There is quite a lot about Docetaxol on the threads here. The May 2017 group has re- named it Doce-tax-hell, so that really gives you a flavour! Hoping that you have good news, and that you manage your SE with some advice from the lovely ladies here. Sending a gentle hug. X
I had 3 EC and 3 docetaxel The docetaxel nearly finished me off, cried with the joint pains and was admitted with an infection. I finished all my chemo on the 3rd Juy and am due a double mastectomy with reconstruction at the end of Aug. I need and L mastectomy and have requested a R but need to see the psychologist on Monday.
I developed the watery eyes and swollen ankles / feet and peripheral neuropathy but then last week I have also developed extremely swollen eyes, upper lids and below, so much so that my eyes have been nearly closed. Its all fluid, it goes down during the day but never back to normal and then overnight it all comes back again.
My GP wasnt sure so gave me chlormaphenicol eye drops (it doenst feel like an infection though) and I have a very good opthalmologist who thought it was an allergic reaction to something so have eye drops and oral anti histamines.
I started letrozole around the same time so I dont know if this is lingering effects of docetaxel - has anyone else experienced this? - or is it the letrozole?
You brightened up my morning. I am about to start my fourth cycle of FEC-T the T part although I'm not sure if I'm having the whole lot as in the FEC part also or is it just the T? This was the reason I came on here to find out more when I came across your hilarious account of chemo. We have to laugh at ourselves to get through it and you're right, there is always one day where you just cry and tell yourself you want to die. I dread nausea, weakness, the bone aches, the tiredness and the watery eyes, and I can't wait until that stops I can tell you. Don't get me started on the injections although they are doing good they make me feel like utter crap. I still have a blue boob and i've become quite attached as I've never had a tattoo before but its now fading and I feel kind of sad about that in some weird way? I know you wrote this master piece over a year ago but it was so well written that I had to contact you and just say I hope you're in a better place now and all is well.
For anyone starting chemo, I will never lie to them. Chemo is hard and sometimes nasty but doable and like you, I always stop and remind myself mid meltdown that there are people out there who are much worse off than me.
Thanks again for brightening up my morning!
I need to know how long your side effect last due to docetaxel.
I have taken 2 injections as at now. but still I didnt get my appitite.
doctor says it cant be due to the injection.
but i dont believe that.
Hello everyone, you will no doubt guess I am not female nor am I being treated for breast cancer but I have had three treatments of docetaxel so far and have been viewing various forums to calm myself regarding side effects.
I admire you all so much and am heartened by so much positivity, I hope you all have excellent outcomes.
My quick story is a nasopharyngeal cancer detected about three years ago. Low dose chemo and 35 radio treatments seemed to have cured it, so I had a relatively trouble-free 6-8 months in 2014. Then some back pain arose and persisted and they found a metastisis in the form of a tumour in my spine. I underwent spinal surgery, radio and chemo from January 2015. Then, early this year, a routine scan showed that the tumour had re-grown so another spinal operation, three rods inserted this time and starting on docetaxel which is apparently known to be beneficial for other cancers. Oh, and the scan showed that I had some new little spots of cancer.
The docetaxel gives me aches and pains, small rash, tiredness, bloated stomach with a constant gnawing discomfort, increasing neuropathy, constant blowing of my nose, hair loss and a general feeling of crap. Not sure if the occasional down mood contributes to some of this or not. My sleep has gotten worse....a sense of bone pain (more a nagging ache) seems to make me take hours to fall asleep.
I had scan last week and get results in a couple of days so anxiety is also a factor.
Just wanted to share my story to see if others are experiencing some or all these effects (besides those I've already read) and to thank you all for contributing to such a forum which really does help people like me to hear about real people dealing with this particular chemo drug.
All the very best.
Hi Helen, what a great post you have written. So much useful information and some funnies thrown in as well!!!. I am due to start chemo 3 x FEC and 3 x Docetaxal next week hopefully and was wondering how these drugs affect you, but your post has answered many of my questions. Thank you 😊. Still apprehensive but need to get through this treatment. A big thank you xx
I thought some people here may find it helpful to have an update from my experiences with Docetaxel and FEC. I write a blog and I`ve had a number of comments from readers who about to start treatment who would like to know what may be ahead. I know everyone`s journey is different. Here is mine so far.....
I had my sixth and FINAL chemo yesterday and I am still quite high on happiness that this part of my treatment is now over and also the steroids make me feel quite happy. The feeling reminds me of when I was a young gal (I`m 62) and used to smoke a bit of pot with my mates and then get the munchies. Steroids definitely give me an appetite although I know they don`t suit everyone. Another really nice side effect of my treatment is that one of the drugs, steroids again probably, stop my hip arthritis from hurting so for the last two weeks of each cycle I have been arthritis, sciatica and bone ache free which is wonderful.
The first three treatments I had were a drug called Taxotere, in the UK it`s often referred to as Docetaxel (dosi-taxle.) This made my bones hurt a lot but I quickly remedied that with large mounts of Ibuprofen. Having checked with my doc` if this was ok, to take 800 mgs in one dose in the morning and then the pain would go away all day, with a little smile playing about his lips he said it was fine and wouldn`t kill me so that is what I did. I think he was being ironic. I took a co-codemol at night, 500mgs for around 5 days. You really don`t have to put up with pain and I urge you to seek the advice of your doctor like I did. Other than that, the Neulasta injection which is self injected to increase your white blood cells, also increased my bone and back ache but all of these side effects go after 7 – 10 days so even when you are at your lowest ebb and weeping in the park (it`s where I go to have a good cry) you can comfort yourself with this because it`s a common experience for many people.
I tried not having the Neulasta injection last month. I told myself I would boost my immunity naturally with a good cancer diet. I ate a ton of Kale, beetroot, garlic, ginger, cumin, etc etc. and immediately developed netropenia where your white blood cell count drops dramatically, in my case to nearly none at all. I got a rotten infection in my gum, my temperature soared to that of the sun and I went to hospital for four days. Sigh. Now I just have the injection.
About 17 days after my first cycle, I lost all my hair even the hair on my poonani. Gross. I wear turbans, (not on my poonani) I like them and they are cool in warm weather. I don`t want a wig but everyone is different.
Both treatments give me chronic constipation which is pooh! Take lots of Movicon, I mean LOTS and it does help, or buy a spade.
My finger and toe nails have thickened and become ridged and yellow. I look like I smoke forty fags a day using my toes. New nails will eventually grow back. Some of my toes have permanent pins and needles but it`s not too unbearable and should go eventually.
I had a sore scalp for the first few weeks but this wore off. I use Johnsons baby shampoo as I find it soothing. I get really dry, sore eyes each month for about a week. My doc` gave me some pretend tears and they are also very soothing.
Taxotere made everything taste like metal for about a week. FEC makes everything taste sickly sweet. Drink PLENTY of water and I lace mine heavily with a cordial of some kind, or the occasional gin! Brush your teeth plenty too as this will also help take the taste away and suck mints or hard fruit sweets or toffees until you get your taste buds back. I like soup and I love granola, two of the few things that remain tasting lovely no matter what. I use low sodium salt as I had high blood pressure but after my diagnosis I stopped smoking and don`t drink alcohol very often so my BP has now dropped down to normal. BIG plus for me.
FEC makes me feel sick but this is very easily remedied for the majority of people with Emend, and Domperidone. Insist on having the two drugs, they are a life saver for many people including me. I do not have an accumulative effect with FEC, the final treatment was 3 days ago and I`m still rocking on with a smile.
FEC makes your wee go pillar box red for about 3 days. It`s a bit disconcerting if no-one has explained.
The most unpleasant side effect with FEC is that it makes my muscles very weak. I love to walk with my dog but I have to ensure I am walking somewhere where I can sit down or I feel like my legs will give way. I also get a bit breathless and that`s because the drugs affect my red blood cells as well, and they`re the ones that take oxygen around my body but I know it will all pass. This too will pass as my God and Buddha remind me every day.
About 5 days after my treatment I usually have a day where I feel terribly emotional and have a good cry. It helps, I kick myself up the arse and remind myself that there are many people who are so much worse off than me and crack on with living in the moment instead of worrying about the future.
I have a bit of chemo brain but I play on that! Chemo brain makes your worms come out wring and you can forget stuff and feel fuzzy in the head. A bit like a mild hangover.
I had chemo first. It`s called neo-ajuvant therapy and is designed to shrink the tumour and lessen the surgery. I`m going to have my surgery, a lumpectomy in my left breast, some time in July and then some radiotherapy so I`ll get back to you a bit later. Please email me with any questions, I will reply to everyone.
I am so glad I have managed to do all six, I nearly gave up on number four, chemotherapy makes you feel rubbish there is no doubt. But it`s manageable if you find out what works for you and I have been left with a sense of achievement, a bit like when I walked up mount Snowdon with the Australian but that`s another story. As the doc` said when he gave me my diagnosis, “you have a long road ahead of you.” Finishing the chemo helps me to feel like I have given myself the best possible chance of remaining here on this wonderful planet, a while longer.
I went for a scan last week and the nurse said the tumours have shrunk but not a lot. I slipped into the slough of despond for a bit and had a very bad day. Some people just don`t know how to deliver information in the right way. When I spoke to a registrar this week he said that until the tumours are removed and biopsied they do not know how many live cancer cells I have remaining so I do hope the feccin` FEC has done the trick. I have to have radioactive dye injected quite soon so not only will I have super powers but this will tell me if the cancer has spread to my lymph nodes. The dye will also make my breast go blue apparently so I am considering auditioning for the follow up to Avatar, or changing my name to Helen Smurf-boob. What do you think?
Yes my comment was for you - it took the oncologist a long time to persudae me to have areduced dose and she said it would not affect the efficay of the treatment and was very pleased I agreed. So hope it goes well for you.
I saw my onc after first T and she reduced the dose slightly which made a big difference. Someone else on this forum had their steroid extended which also made a difference. Have youspoken to anyone about the severity of your SEs?
we were talking in Live Chat earlier, I've tried to send you a PM as I said I would but it says you haven't got this set up, maybe you can PM me and then I can reply.
It was a relief to read that someone else had similar symptoms. I got on really well with my first three sessions, despite the fact that as a Bi Polar sufferer the steroids have had to be adjusted or I dont sleep. I have just been given (5 days ago) D and had dreaded its effects. I feel as if I have been run over. Everything hurts, even my finger nails! No one said it would get like this!! Added to that, I felt the need for reassurance at the weekend and all the helplines were either shut or manned by those without my notes! Thank goodness for 111. I have read other notes on the community and look forward to coming out the other side again (please). Thank you for letting me offload.
Hi - it took a few months for the puffiness in my legs to go but everything evenutually returned to normal. On reflection I was too impatient. Be kind to yourself, I climbed Machu Picchu 18 months after my treatment and I feel great now. You will feel better !
I am so relieved to read these postes. I finished my last (of six) taxotere treatment a month ago but have been complaining to my oncologist about the heaviness and aches in my legs since the second treatment, without any feedback. The cumulative effects of taxotere on my muscles is debilitating -- I cannot go up a flight of stairs without resting half way. It is comforting to hear from others that this side effect will subside with time!
Just wanted to let you know that i had my last Tax at end of February and i feel for all of you who are going through it at the moment.
However, take heart - although it seems never ending it does get better in time. I also suffer from fibromyalgia which my Onc told me would make it even worse, and for some time i did have to use a walking stick to get out and about.
I now walk everyday (without stick) and can walk up to 5km (3 miles) and am taking part in the Twilight Race for Life in 3 weeks time.
My advice would be, a couple of weeks after treatment ends try and start doing some gentle walking every day and slowly build up, even if it means having to use a stick or hold on to somebody.
Just to make you smile (hopefully!!!!), one day when i went for rads the coffee shop was closed and i went to get a chocolate bar out of vending machine - instead of bending my back to get the bar out, i bent my legs.............and didn't have the strength in them to get back up and ended up falling on my bum. I then had to turn over onto my knees with bum in air and a helping hand from my mom to get up - very ladylike
Anyway, good luck to you all, and remember you have come this far, and things will get better xxx
I had the same symptoms and went to see my GP who tested my blood for bone strength and Vit D. I had a very low Vit D count and was put on vit d tablets - which have made me feel much better.
It can last for weeks or months. I was told thatveverone is different.
I have to force myself to get moving and can't stand for long periods of time. I am 45 years old and was in great shape before chemo butveven so I had to use one of those motorized scooters at the grocery store.
It has been 2 weeks so far for me . I am hoping for the best but it is easy to get really depressed.
I was so excited about chemo ending, but the side effects from Docetaxel can be long lasting and something that my Oncologist never mentioned could happen. I had my Radiology consult yesterday and I have to wait 4 to 5 weeks to recover now before they will start Radiation therapy.
I am so glad to have found this forum and your thread. The last few days I have been so freaked out about this muscle weakness and fatigue that started 15 days after my last Docetaxel treatment. I too felt so disheartened that I seemed to be going backwards not forwards and I have never heard of this kind of side effect. This is my final chemotherapy treatment after 5 months and I just want to start living again. I have 5 weeks of radiation but that will be nothing compared to the Hell of chemotherapy. The pain from Docetaxel was the worse pain I have ever had and I had cephalitis in 2007.
About this latest and fun side effect, I live in Saskatoon SK in Canada, I was told by the Saskatoon Cancer Centre that it is a rare side effect that will get worse until it plateaus and it can last days or months then slowly get better. It is a cumulative side effect of Docetaxel chemotherapy. It can develop after the second treatment and the greater number of treatments that you have, the greater the probability that it can develop. There is s no treatment for it...:(
glad to hear you made a full recovery following tax, i have just finished 6 of 6 9 days ago,
the tax truck has hit me hard this time, its run me over, gone backwards and forwards a few times, and now its parked up, hopefully to move off again shortly lol,
what a nightmare!!!!!!!
just rads and further surgery to look forward to now.
anyway all the best to you and keep up the good work lots of love liz xxx
I just wanted to say that I also had dreadful weakness in my legs after Taxotere last year. I had 4 cycles and it got progressively worse. By the end of it I could hardly lift my legs, found even a few stairs a nightmare, and they felt incredibly heavy. I am reassured that I was not alone in this.
More importantly, I wanted to reassure you all that it does fade - I realised when I climbed a flight of stairs and was at the top when it struck me that I had not needed to stop. It felt like a huge milestone and was the start of regaining my strength. Now I am swimming daily and clocking up around 7 kilometres a week, plus going to the gym three times so it does go away!
Big hugs and paf to Taxotere legs
sorry to hear you arent feeling too good, i know exactly what you mean, i had my last tax of 6 last friday and only really felt anything like today and so thats 8 days spent mainly in bed,
hopefully you will start feeling better soon, just take your time and rest, rest and more rest,
sending you love and best wishes liz xxxx
Well, I had my final Tax on Wednesday and can now barely walk again. My legs had just started to get marginally better and now I'm really worried about how bad they'll get this time. I went out for lunch today with chocciemuffin which was lovely but has completely done me in so I think that's it for any activity for the next few days.
I don't expect the walking to get better for quite some time but I've treated myself to a Flipstick (Google it!) so I hope I'll still be able to get as far as the village shop and church without having to drive (I'm so determined not to give in to this!)
Hoping to go to the Les Deux Alps for a week in August but won't be doing too much walking! My OH and DS will go snowboarding (summer glacier!), foster son will ride mountain bikes and DD will lounge by the pool while I ride the ski lifts up to nice cafes and eat chocolate cake whilst reading my Kindle, maybe ambling along a little way to a sunlit alpine meadow helped by my Flipstick 🙂
Thank you everyone
All that is helpful. At least I know I'm (more or less) normal. For me the pain subsided after 3 days. I also got some much stronger painkillers from the GP. I do feel weak and am walking very slowly - much like Mrs. Overall, but without the joi de vivre.
Everything tastes awful - I think many of you have that, and I'm keeping on top of a sore mouth. Fluocanazole has bested the oral thrush, but sadly that didn't affect the taste. Oh - nosebleeds now. What fun.
Well, we are off camping next week anyway. Probably not doing very much abseiling or yomping, but a gentle stroll perhaps!
I hope you all have a good weekend as we chew over the results of the elections. Cheers hotpot
Had my last Tax on Saturday 30th April and feel like about a hundred and ninety. Nice to know that it is not all my imagination. Hopefully we will all lose these horrible side effects soon. Thanks for the posts very reassuring. I hope, like you SuzyB, maybe if we go backwards long enough we'll get back to 20!
SuzyB - good to hear that you're slowly regaining your energy :o)...I'm glad to report I'm feeling about 55 today, so I'm heading in the right direction, which is good as I started Rads this morning. I'm with you on hoping to rejuvenate to my twenties - now that would be a result LOL!
Hope everyone else's Tax SEs are abating...
Also not wanting to tempt fate, but doing so anyway...my aching seems to have subsided a bit. I am still decrepit but a less so, as Heather said, 70 instead of 90, if it keeps on like this, maybe I'll end up 20 again, here's hoping!
Am feeling a tiny bit better today -say like a 70yr old instead of a 90 year old! - but don't want to tempt fate too much incase its all change again tomorrow :o/
SuzyB - I had a lot of swelling (seroma) after my mx (Oct 2010) and had about 500ml fluid drained off my right about 2-3 weeks post op. It did swell again but settled down after about 5 weeks. The right side is still bigger than the left (after double mx) but drs think all ok. BTW did you have manuka honey dressings on your wounds after surgery? As the swelling burst a couple of my stitches, the Onc nurse put these on to help speed healing...really worked. Hope you're having a better day.
Heather - yes, had mx after chemo (as I couldn't face it at first) and rads will start as soon as this is healed. It keeps swelling, had it drained once but it will need doing again and they can't scan me for rads until I'm a consistant size/shape.
Still aching! I'm in real old woman mode when getting out of bed in the morning and shuffling downstairs, it's a sight to behold!
Keep fighting the TAX
I am now just over 3 weeks since last TAX & you are describing exactly what I have been feeling & it is such a relief. I really struggle to lift my legs to get upstairs and can only walk around town for a very short while at a slow rate. also when lifting my arms up it really aches. Burning numb feet too. I seem to be living on pain killers at the moment as my back is also playing up & I have probs opening jars too - I feel worse than I did after my second dose so I assume it is the build up as you say. I also thought it might be the extra weight (I was overweight already so this really hasn't helped!) but now think it is the TAX so will try to stop worrying so much
I love this forum - thank you so much for reassuring me
XXXXXX jo XXXXXXXXXXXXXX
Thanks for your experiences...it seems it's only by word of mouth from the forum that we really learn how rough Tax is...even at my Onc appt after my final Tax(when I said how tired/achey I was feeling), I was told it should go away in a week or so....famous last words!
SuzyB - thanks for your post...my Tax finished a week after yours so it has reassured me that I'm not the only one still feeling like this...please update how you're feeling when you can...when are your rads scheduled to start? Did you have mx after chemo?
Thanks again everyone xxx
I've got my third and final Tax on Wednesday this week. With the first one I had really dreadful bone aches for a few days - I felt really terrible. After about 10 days my leg muscles got a bit achy and weak and that got a bit better before Tax 2 but not completely. With Tax 2 the initial bone pain was a lot less but the weakness got very bad indeed after about a week and I can't always get up the stairs without stopping part way. Walking along the level is hard but not impossible, but slopes and steps are downright nasty.
It hasn't got noticeably better this time so I'm really very worried about how bad I'll get after this dose and also how long it'll take to recover. I think I'll need a zimmer frame! Joking aside, I am seriously thinking about getting a walking stick. Not quite what I intended to buy at age 45!
It does seem as though this SE doesn't affect everyone, at least not to the same extent so you might be OK. The increased steroids don't help either though as they cause increased fluid retention so cankles are also the order of the day for some of us.
I've got rads starting at the end of May then I'm supposed to be going back to work (I'm taking a week's leave after rads but can't afford to drop to half pay so need to be very careful with dates). I only work part time and they'll reserve me a parking space next to the building so I hope I'll be OK. Luckily although I work on the 1st floor we have a lift.
Thank you everybody. I have just started 3 x tax and although the oncologist had said to expect muscle and joint pain, I hadn't expected it so soon. I can't say I'm enjoying this but I can see that I'll just have to get through it. Can I ask - does it get any easier during the week cycle? We are hoping to go away during the third week and I would like to be able to walk a bit. Also - does exercise make it better or worse? Best painkillers?
All advice gratefully received. Cheers Hotpot.
i am day 3 last of 6 tax, carnt get out of bed today! at one point i looked at the clock and thought it said 10 past 10,it actually said 10,to 1.
at least this was my LAST DOSE OF POISON!!!!!!!!!!!
i have been the same all the way through though the side effects have been pretty much relentless.
most of the ladies on here have said the same too, it takes quite a while after finishing tax to re gain your strength, it really takes it out of you and has an accumulative effect over the weeks or months you have been poisoned,
i have been assured, given time, it does get better, so heres hoping,
i am now waiting for my rads to start, then further surgery planned yippee, loads of good stuff ahead,
keep smiling, positive we will get there,
love and best wishes liz xxx
My last TAX was March 7th and I'm feeling dreadful, like a little old lady with all my aches, pains and stiffness!
Like the rest of you, I was just not expecting this at all and it is starting to get me down. Got rads when my mx healed enough. Also got pins and needles and numbness in arms. Just hope it starts to get better soon; people keep saying things like 'oh, you've finished chemo, well done' as if that was the end of it when I actually feel worse now!
Any hoo it's a lovely day so I'll stop feeling sorry for myself now and go and read outside 🙂
Here's hoping recovery for all
I hope everyone has been able to enjoy the sunshine lately 🐵
I'm now nearly 7 weeks post my last tax and still feeling achey and tired...it's getting to me now because I thought I would feel a bit more 'normal' by now..this in turn is making me feel more down than I have been through the treatment.
I'm starting rads on Thurs and wanted to be going into with a bit more energy.
I would love to hear from either those on the same time frame as me as to how you are doing or ladies who are a bit further down the line post-tax to hear how long it's taken you to resume feeling fitter.
hi soi,its cool here, the heat must not be helping you at all, the muscle, aches and pains are getting a bit better,but up until today i couldnt bear to touch myself let alone have a massage!!!!!!!
roll on the last one, i am dreading it, but want to get it out of the way, you know what i mean dont you?
I havent quite got to the point where i feel i could go out yet, i am on day 7, one more neupogen injection tomorrow too,
all the very best to you, and i hope you are well enough to travel and be with your family very soon,
lots of love liz x
elizabethtracy I'm the same as you. Got last tax tomorrow and cant wait till its over. My muscles are so achey and arms like lead. Trying to get out for walks but it is in the 90s here everyday and so humid I'm done in by the end of the road. Feel sitting around dosnt help eother so it walks around the sitting room for me.
Hope it will ease off after this last one. Desperate to get back to uk to see family as haven't seen them since diagnosis and hoped to fly home 1st week in may. Two 8 hr flights so not looking forward to it if still so achey. Was wondering if good Massage would help.
Stella - I'm beginning to wonder if this weaknees and leg discomfort isn't linked to the neuropathy I've developed from the tax.
hi everyone, well done moorcow, i couldnt walk three steps at the moment, so 3 miles is definately an achievement, more information about this tax is needed, i am 44 feel 144 and got 1 tax left, i must admit i really feel like i carnt do it again i have 1 left, this 5th one has been really, really hard, the total no energy thing is starting to get me angry now and thats too negative an emotion plus it takes up too much energy lol
anyway well done, hope you gain strength on a daily basis, as for the weight i wouldnt worry too much, if i could taste anything it would be a bonus x liz
HI everyone, thought I'd jump on to celebrate walking 3 WHOLE MILES, half of which up a lake district hill last weekend - my usual 14+ miles, and I finished my Tax in august2010. Hmmm. Don't panic tho, things really do improve its just my improvement is very slow, I can now swim 25 lengths of regular /large pool but somehow walking is the hardest-I also knackered my knees trying to jog too soon after I finished chemo and had no muscles at all...
have lost 4 pounds of stone I put on tho so thats great...
we can do it!
Dancingirl-know what you mean - all those activities we took for granted before seem like a figment of imagination at the moment...was in the park today(managed to walk there & back so happy about that 🐵 )and could hardly believe that I used to be able to run 3 laps of the place pre-bc!! That will def be my goal again over coming months!
Hatty - yes, I wasn't prepared for weight gain either. I'm heaviest I've ever been in my life! and none of my work 'bottoms' fit me anymore so serious weight loss needed to get back into those trousers/skirts. Due to start back in July (after rads) so hopefully can shift a bit by then....don't want to waste money buying bigger sizes for short term use!!