Briefly, I’ve had two EC chemo sessions and on the whole my body dealt well with the side effects. Last Thursday I had my first Taxotere/Docetaxol, gosh have I felt dreadful since! For the first five days I was injecting myself with Zarzio. Thurs/Fri felt OK, Saturday night my body started to ache, by Sunday I had chronic aches and pains in every part of my body, and although exhausted I couldn’t sleep for longer than two hours as the pain woke me up. The pain was literally everywhere in my body, from head to toe, I even had earache and jaw ache, eating and drinking was difficult as it hurt so much when I opened my mouth. Monday I rang my Breast Cancer Nurse who arranged a prescription for very strong painkillers to be collected from my GP, and they helped alleviate some of the pain, Monday night I slept well. Yesterday and today most of the pain has been manageable, but I have pains in my fingers, calves, feet and toes; difficult to describe the pain but feels like my joints are frozen, and bending my fingers is painful, feels like it could be the nerves which are affected. Last night I couldn’t sleep as my body was warm but hands, feet and lower legs felt cold.
I am now feeling desperate as I cannot get any relief from the pain and exhaustion. I feel like running away from my next chemo cycles, as I cannot face going through this all over again, and wonder if it’s worth it! Should I say enough is enough and hope a mastectomy will kill the cancer, or is my treatment the only solution for a healthy future.
I would appreciate others comments, so please, please someone give me the benefit of your experience.
If I sound desperate it’s because I am. Apologies if I haven’t articulated my symptoms etc very well, but my concentration and memory are poor at the moment.
I am sorry to read that you are having such a difficult time with your treatments and just wanted to post our helpline number which you may wish to call for further support and information, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000
Hello Libsue
So sorry to hear this. I had this stuff (or similar) after my fifth cycle of FEC as my blood count was so low. They didn’t warn me it might hurt and i ended up like you in agony. I only had three injections though and so with painkillers it got better and then i only had one more cycle of FEC to do so i declined any more injections.
How many more cycles do you have to go?
My only advice to you is to try and stick with it - but keep in close touch with your BCN to make sure they know how bad it is for you and so they do all they can to help - because i think you will regret it if you walk away. They might be able to change you on to something else.
You dont say what support you have at home but dont hesitate to lean on people. My experience was they were so pleased to have something they could do to help me through.
I survived chemo and i am no hero - I moaned and complained all the way through - but I survived so you can too.
Stick in there if you can - we will all be rooting for you!!
Sorry to read that you are having a bad reaction to Toxotere. I have had 4 EC and 3 Taxotere - will be having my final one next Wednesday. Like you I had a very bad experience with my first Tax - and they reduced the dose for the third. My second Tax wasn’t a harsh as the first one. I think it was just my body reacting to the new drug and Taxotere is a very toxic drug! However, I saw my Oncologist yesterday and after examining me she confirmed that the tumour has shrunk so much that all she could feel was a very slight thickening - so the Chemo has done what it is supposed to do.
I know you are feeling dreadful - but it will pass and it will be worth it. I find that after the first 10 days I start to feel a lot better.
Hang on in there - read some of the other threads about Taxotere - there are a lot of ladies in here who are going through the same treatment as you and we will support you every step of the way.
I posted like you on TAX , i too was deaperate and thought they were trying to kill me !! Unfortunately some of us suffer on it , i found that by taking the pain meds before my chemo and building up a level helped a wee bit . By day 8 i seemed to slowly pick up . I am sorry i can’t help more , but i do feel for you . I hated Tax .xx I am now 4 weeks post MX , so we do get there .
I hope someone comes along with more tips . Take Care.
I know its hard at the moment and by the sounds of it your not having a great time on the chemo, but try and stick with this, it does work, I had the same regime as yourself and my primary tumour went from 6cm to 2mil in size after chemo, all the drs were very pleased with the response and that is what you want to reduce the tumour so they can operate on it, was your primary a large tumour? Speak to your onc and ask if they can reduce the amount of taxotere you are receiving, my last lot of chemo was reduced because I complained of numb fingers and toes, so they reduced the amount, Its all so hard on us but these treatments do work chemo does shrink cancer and the ultimate goal is to rid ourselves of this disease, so we have to stay strong and keep mindful that we are doing all in our power to heal ourselves. If I can get through it you can and you will.
Sending lots of love and light and healing vibes
Sarahlousie xxx
Hi LibSue, you’re having a horrid time of it from what you say. Make sure they know about your side effects before the next dose, as others say, they can reduce it and it’ll still be effective. Another trick TAX likes to play is to make you feel awful and depressed, (I was terrible after my first one with this)so bear that in mind, it won’t be helping! It lifted gradually from days 5 to 10 for me.
and by way of encouragment, I couldn’t walk more than 15 mins at a slow pace on TAX - in fact my feet got so sore sometimes I could barely stand - my last dose was end of April and I’m back to 3 miles in less than 50 mins, the dog can hardly keep up!
You sound like you’re describing my experience of Taxotere to a tee.
It’s horrible with the pain and the aches and not being able to sleep or get comfy, so my heart goes out to you.
It does end eventually, honestly it does!
Try hot water bottles on your cold parts, they did wonders for me. Take painkillers an hour before bed and keep some on your bedside table too.
Have ahot bath or shower before bed if you can too, I found I couldn’t get out of the bath after… whoops. But hot shower felt amazing in de-aching me.
I was given morphine and codeine, I found they both worked really well (not to be taken at the same time). I hobbled like a little old woman and I was miserable as sin.
Do bear with it, I know you dont want to do it, but if you accept it, get what help you can and prepare for it happening it makes it easier to deal with, I wasn’t working through it.
So sorry you’re so desperate, I felt the same. Keep with it, it’s clearly having some effect on you, thats all that kept me going at the time xxx
I really feel for you and so sorry to hear what you’re going through.
I don’t often post about my chemo because I had such a terrible experience. I ended up having 4 x FEC and 4 x Taxotere and I don’t honestly know how I got through except a very strong will to survive.
I was very, very sick with the FEC and lost 2.5 stone. The taxotere gave me a lot of pain mainly in my back and severe headaches, dizziness, sickness and loss of appetite,terrible weakness and skin rashes. After my first tax, I had a severe reaction and my dose had to be cut by 25% - you could discuss this as an option with your Onc. The second time I developed neutropenic sepsis and was hospitalised. I then had a high temp after each taxotere.
But I did get through it, terrible as it was. I kept thinking to myself if it’s making me feel this dreadful then it must be destroying any cancer cells. Knowing that other women had got through also helped me a great deal.
I had various types of painkillers. Mainly I had high strength co-codamol, other times tramadol and also oxycontin.
You are though having some very specific side effects and you do need to talk these through with your Onc. Before your next appointment can you speak to your chemo unit or ring your Onc’s secretary to explain what you’ve been going through? They really do need to know before your next session. Perhaps if taxotere isn’t an option then you could have more FEC.
I found you do have to be quite forceful in explaining the side effects and how bad you are feeling. Looking back I wish I’d been better at doing that instead of putting up with so much.
I have my last TAX of 3 on Friday. Ended up in hospital for 5 days after the first and the second was worse than the first. Like you had awful hot and cold spells and on day 3 and 4 didn’t get out of bed, except to go to loo. I took co-codamol 30/500 and ibuprofen regularly for the pain and zopiclone 3.75mg at night to help me sleep. Also hot showers were good before bed as El Kat suggested.
Hot water bottles were a big help for the leg pains, cream for the peeling feet, hydrocortisone and vaseline for my crusty nose (and lots of tissues) and chlorhexidine, bonjella and igloo for the mouth ulcers. Eating was difficult and over the course of my chemo I have lost 10kgs.
There is absolutely no need for you to be suffering with pain that makes you feel like giving up. Contact your onc / GP / BCN - whoever you need to, to get what you need and don’t let them fob you off. Take someone along for support if you have to.
I had an argument with a locum GP who didn’t want to prescribe me sleeping tablets and had the cheek to ask if I had tried any over the counter remedies (like Nytol). Hmmmm lets see, I have stage IV breast cancer and he’s worried about prescribing sleeping tablets when I am having some of the most toxic drugs known to man! Sometimes you just need to be firm.
Thank you so much for answering my plea for help, you are all wonderful, it helps tremendously hearing from those who truly understand.
I apologise for my late response, I went away to soak in the bath followed by dinner. My husband cooked a beautiful meal (he’s a chef) unfortunately I couldn’t do it justice as my mouth hurt so much, I did manage to eat grilled fish but not the veg.
I am going to take your advice on board and discuss how tortured I’m feeling with my Oncology team. At my last appointment with the Oncologist, which was when I was informed my prescription would be changed to Docetaxol I felt rushed through the discussion and things weren’t fully explained, after reading your comments I’ll make certain that doesn’t happen at my next appointment.
To answer some of your questions posed…
I am scheduled to have a further three Docetaxol cycles. I do have wonderful support at home, my husband is very helpful and my daughter is always ready to come round at the drop of a hat if necessary. My tumour is 5cms and grade 3.
Many thanks for all your tips and advice, and I shall be putting all into practice.
I will keep you up to date with my progress.
Thanks too to Lucy BCC for giving me details of the site helpline which I will ring tomorrow if still feeling low and desolate.
Take care everyone, and wish you all future happiness and good health,
Libsue,
Good to hear you Have a Plan. And lovely family help.
I did not have Tax, had FEC and had Filgrastim imjections all the way through. In the first cycle I had a big reaction to the Filgrastim with bone pain, big shakes and generally feeling ill. It was never like that again, was as if the first kick up the b*m to my bone marrow hurt but after that it just chugged along. Here’s hoping that it might be like that for you with the Zarzio and so “only” Tax effects from now on. (I know, I know, don’t shoot me ladies on Tax! I envy you for the good effect on the cancer but not for the s/es)
Libsue, what you’ve written on here could have been me a month ago. My Oncologist gave me the option of not having the final TAX because the side effects had been so severe. I opted to go ahead having come that far. It’s now just over 3 weeks since my last one.
There is light at the end of the tunnel.
Although I still have some of the side effects they are diminishing and this week I have had a couple of days when I feel more like my old self
which makes me optimistic that things will continue to improve.
I ope they do for you too. TAX is tough, but you WILL come out the other end.
Good luck.
I tell people that Docetaxel has a ‘sting in it’s tail’.
My chemo followed on from my masectomy with reconstruction and I started with 3 FECs followed by 3 Docetaxels and I know which of the 2 I prefer!!! OK - the FEC made my veins collapse so that I now have a sub-cutaneous port inserted as I am on Herceptin for a year, and I was sick on the 1st evening after FECs 1 & 2, and it did give me a headache, but compared to the ‘Dreaded Docetaxel’ FEC is a doddle. In fact, I felt so awful after my 1st TAX that I had to delay my 1st herceptin, and I felt as if I had doubled in age overnight! To make matters worse I must have been grinding my teeth so hard during that night that I managed to break a tooth! My legs even ached in bed.
I am now 6 weeks after my last Docetaxel and the dreaded chemo gremlins are still hanging on in there! I have swollen ankles due to fluid retention which is making my legs ache and feel like lead weights, I feel and look like a barrage balloon, and my feet and fingers tingle like mad. I feel worse now than I did after each of my docetaxel doses, and my chemo nurse said that this is often the case with residual chemo effects hanging around for a couple of months after the last chemo dose. My hair is beginning to grow back, albeit fuzzy so that I look like a ‘fuzzy-wuzzy’ badger! I will never, ever complain about having a bad-hair day again!!! However, my eyebrows seem determined to continue to disappear going the same way as my eyelashes. My nails are beginning to recover with pink bits pushing out the horrible discoloured bits, and the hairs on my legs are putting in an appearance once more!
I start my radiotherapy tomorrow so, and am due to have 15 sessions, the last being on December 7th so at least I can look forward to all my treatment (other than the herceptin which is not chemo) being over before Christmas.
I know that this doesn’t sound very inspiring, but stick with it - if it didn’t do the job then we wouldn’t be given it. At your next pre-chemo session tell your chemo-nurse how you are feeling and I am sure that they can come up with some way of alleviating your symtons, but don’t suffer in silence!
All I can say is that at my very first appointment with my Oncologist way back in June I was told that the chemotherapy treatment I was going to receive was referred to by the initials of the drugs in question – FEC-T. For those of you who are fans of Father Ted I would say that never was a treatment so aptly named!
After re-reading all your comments and digesting them fully it seems many of you have had bad reactions to Taxotere/Docetaxol. I read a thread on here re Taxotere and gleaned that the zarzio injections contribute greatly to the dreadful side effects. Does everyone on Taxotere need the injections? Is it possible that for my next Tax cycle the injections won’t be necessary? I’m sorry to fire all the questions but you all appear to be more informed than me. I also learned that the steroids prescribed when on Tax are stronger than when given EC, another question sorry - why do some of us start our regimen on EC and others on FEC?
I forgot to mention on my first post that I also have sore, itchy eyelids, did anyone else suffer this side effect and if so were you prescribed a cream for it?
I cannot fully express how grateful I am to you all for your support and help, thank you so much.
Yes the injection (Filgrastim - Zarzio) can cause aches and pains. I usually get some back pain which lasts for a couple of hours.
You can have TAX without it although after my first one, I ended up in hospital for 5 days with neutropenic sepsis. This doesn’t always happen. Have a word with your onc or chemo nurse. You should be able to have adequate pain relief. Do you take the injections at night? I found that was the best time, just before going to bed so I could load up of painkillers and sleeping tablets.
The steroids are stronger on TAX because of the increased likelihood of an allergic reaction. I have 8mg Dexamethasone (Decadron) twice per day on the day before chemo and a further 2 days after that. I take them as early as possible (usually as soon as I wake up and then another 4 hours after that)
With regard to your question of EC Vs FEC, it seems to be an onc’s decision based on the individual. When I went to the Marsden for a second opinion, they said EC x6. My onc said FEC x3 and TAX x3.
I have the itchy eyelids and crusty eyes. Haven’t used cream, just bathe them in salt water a couple of times a day.
I know it’s all pretty horrible but the treatment will be over soon. I keep telling myself that the worse it is, the more it is kicking the cancer.
Just a quickie to say my 1st tax was unbelievably bad- I literally felt as though I’d been hit by a bus I dreaded the 2nd so badly but tolerated it so much better. I got lots of very strong painkillers but had less need for them. In my case, the 1st treatment was a real shock to the system but it got a little easier. Still not pleasant but more managable.
All the best
tina x
Just to say I had the same experience as Laurie. I had one tax without the injection and I was in hospital for 5 days with neutropenic sepsis being pumped full of antibiotics. Horrible and frightening.
Sore, itchy, watery eyes are common during chemo. I found the best thing was Murine eye drops for dry eyes (but not Optrex). They’d been recommended by an opthalmologist for another problem prior to treatment and they really helped through chemo.
Hi Libsue
Just wanted to empathise with how you are feeling, like you the EC was okkish, but Tax hit me like a steam train, with all the symptoms you describe and I remember in the small hours desparately watching the clock waiting until I could take the next dose of painkillers. However… I hope to give you some words of encouragement to stick with it from my experience ( which was now ten months ago) For me the first dose was the worst and whilst the other three doses were not pleasant ( particularly mouth & lack of taste etc) I did manage to complete the course. I am glad now that I did, there were many moments when I waivered, but I just kept thinking that this was the gold standard for chemo and it would eventually be completed. I bought a single electric blanket and put this on the sofa while I watched rubbish TV and dosed on and off - this was comforting. Be kind and gentle with yourself …Sending lots of hugs
I just wanted to echo what others have said. I did AC-T and managed reasonably well on AC but docetaxel was nothing short of a nightmare and looking back now (Dec 2010 to April 2011) I know there were lots of times when I was desperate enough to walk away and I ended up in hospital so many times but I did eventually come out the other side.
You really do need to talk to both your onc and the chemo department about all this so that they can do their best to help you get through it. Remember that you don’t have to suffer - ask for help!
I dreaded the 2nd so badly but tolerated it so much better. I got lots of very strong painkillers but had less need for them. In my case, the 1st treatment was a real shock to the system but it got a little easier. Still not pleasant but more managable.