Hi have had 4 ec and had 1st taxol last wednesday. Found the pain in my wrists, toes, legs, and overall joints excruciating. Can anyone recommend any kind of pain relief for this? Have tried parcetomol, ibuprofen, anadin extra, codeine, and although they help a bit, they don’t help enough. Seriously considering either getting a reduced dose, or stopping it, if its really bad second time around. Any advice appreciated…
Am supposed to have 4.
Hi
I find cocodamol is really good for aching joints.
Hope things improve for you,
Mary
x
Thanks Mary, will get some from my oncologist, and see if that helps.
I had taxotere, and had really dreadful pains after the first one. After some trial & error I found taking the maximum dose of both cocodamol & diclofenac worked for me. Diclofenac is a prescription only anti-inflammatory, which I happened to have in the cupboard after previous back pain. I took them before I expected the pains to start each time, and so didn’t let the pains get a hold after the first time. I don’t think I could have coped with going through that a second time.
The BC nurses had told me that paracetamol would suffice! What a load of rubbish. Even when I told them of the dreadful pains when I went back for no 2 they didn’t believe me.
I was advised by my onc to use cocodamol and Voltarol together and to star taking them before the pain really took hold.The first taxotere was so bad that I had to get the GP to come to the house and she prescribed those drugs.However she told me that Voltarol[Diclofenac]is like ibuprofen and you can take paracetamol and ibuprofen together as a stopgap.My pains wee less severe after first tax anyway.lol horacex
Hi Anjana,
I had my first dose of Taxotere on 15th April and a couple of days after that was writhing on the floor in absolute agony with tears pouring down my face. I was told to take over-the-counter paracetamol and ibruprofen, but these were by no means strong enough. I called the hospital after suffering for a day and they arranged for my GP to write out a prescription for stronger painkillers Co-dydramol and Dicloflex. I had my second dose of Tax last Tuesday and the pain kicked in on Friday - I took the new prescription pain killers given to me by my GP and although I still have some pain, it is not nearly as bad as the first time round with only the over-the-counter pain relief. Before I had my second dose, I asked my Onc if dosage could be reduced and he said no as it would compromise the treatment. I guess they have to give a certain amount to make sure it does the job. I have read a lot of threads where people have said that the 1st session of Tax is the worse and I completely agree - I think it will be better next time. Best wishes, Jacqui
Although I have some time to go before my 1st TAX I am reading this thread with dread!
I had my 1st of 3 FEC last week and am due 3 TAX straight after. My problem is that last year I had a duodenal ulcer and ibuprofen, diclofenac and other anti-inflamatories are out of the question. My fear is WHAT CAN I HAVE???
Has anyone any suggestions? - I will bring this up with my onc next visit.
Anita
I was in agony with the first cycle of Taxotere to the extent that I was hysterical 24 hours after the pain started. I had a very extreme reaction to it and the pain was coupled with such severe fatigue that it took over my life for the time I was on it. In my case the only thing I could get relief with was Tramadol which made the fatigue worse as they are a synthetic form of morphine. The tramadol gave me hallucinations about penguins by the way lol!
I had 4 FEC then changed to Taxol. I cannot believe the difference - the pain is just excruciating and I was given oramorp which is liquid morpine to cope with the pain. It gives you a horrible dry mouth but at least it enabled me to sleep. My second taxol is just as bad except apart from the terrible bone pain I also have stomach pain and feel so bloated. I have not been able to eat at all because of the pain but the morphine does at least take it away at night. I could take it during the day but I would be a bit drowsy. My GP was happy to prescribe the oramorph. I am 5 days after chemo and still in pain. I have one more to go - the thought of going through this again in a couple of weeks is horrific but at least it will be my last. The fatigue is horrible. FEC was quite a doddle compared to this!
I suffered horribly with leg and joint pains when I changed to Taxol.I couldnt believe how much pain I was in.I too reported it and was just told to take Paracetemol. I wasnt in any fit state to fight and just put up with it.Very hot baths and hot water bottles helped more than pain killers.
When I had finished I was talking to a BC Nurse (not my own) who told me that I didnt actually have much pain-and that it wasnt Taxol that caused the pain I did have!
I often wonder how these people can make these assertions.It just makes me unable to trust anything else they say after that.
I ‘met’ a friend online through another forum -unconnected to BC. Coincidentally she was on Taxol too. She lives a long way from me and we chatted mainly through MSN .One morning I was lying in bed exhausted from lack of sleep through pain and the phone rang.It was her-ringing for the first time .Her opening words?
“My feet hurt”
If you have pain ,keep asking for proper medication. I didnt emphasise it enough at the time and feel I let those following me down.
So glad I found this thread, I thought I was going mad!!
I had taxotere 18 months ago with no aches and pains that I can remember, 4 weeks ago I started weekly taxol, 2 days after the first dose, I couldnt get out of bed the pain in my back hip and legs was unbearable, my husb had to dress me, it was so upsetting, I rang my gp who prescribed me zapain (codine/paracetamol) over the phone, when I mentioned this to the chemo nurses they shrugged it off asking why I had aches and pains, I said the taxol but they again shrugged me off, now in week 4 I have pretty much constant but manageable pain in my back hip and leg like cramp, I think I need to up the ibuprofen to diclofenac.
Thanks girls
Sue x
I think it is deplorable that the BCNs don’t know about the joint pain that tax causes. I had 3 weekly taxotere dec 05 to mar 06 and mine did recognise the pain. I tried garbenpine but you have to build up the dose slowly before you know the pain will start and then take the full dose. I know I could only crawl up the stairs as the pain was so bad.
I am due to start weekly taxol later this summer and dreading it but am already taking oromorph and have MST so think I will resort to these if need be.
I think it is a case of being careful not to overdose on the paracetamol or ibruprofen and just keep badgering away for strong pain killers like diclofenac and codeine.
Every symapthy to you all.
Kate
I found that Taxotere also left me very breathless. A few weeks after finishing I went for a walk with my OH and could not keep up; I also stayed upstairs a lot of the time as I would get down and struggle to get back up. Another patient at my clinic had excruciating joint pain and was refusing Taxotere after the first cycle as she could not stand it. The oncologists had to persuade her to keep having it. I’ve hear some patients don’t manage all the cycles. At the end I suffered a really bad chemo burn due to a punctured vein and my immune system didn’t exist. I spent a week in an isolation room at the local hospital, overlooking a graveyard and the hospice!
I am very surprised to hear that so many people seem to be in the same boat. I really think they should tell that you that taxol may cause severe pain, and to come back for painkillers if you do. I was quite unprepared, as i was told only very few people got the severe pain, but reading the posts, i think its more common that the hospitals tell you. I went back to the Marsden, and they gave me co-codamol, and said they could prescribe me with even stronger pain killers if they didn’t work. I was given the choice to continue with taxol, with heavy duty painkillers (but with asthma, and a sore stomach, due to all the pain killers i had already taken, this wasn’t really an option) or have taxotere at a reduced dose. The taxol completely wiped out my immune system, and my white count dropped from 3.4 to 0.9. The taxtore pain wasn’t as bad as it was with the taxol, but this may have been due purely to the lowered dose. I would say go back and get pain killers if you need them. You don’t have to put up with it. I will see how i go, but if i feel very terrible, i may miss my last taxotere.