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Docetaxel Joint Pain

29 REPLIES 29
claireevans003
Member

Re: Docetaxel Joint Pain

Hi Jemma, I'm exactly the same :(.  I had first dose of docetaxel after 3 FEC, on Wednesday.  Had various things first few days then yesterday the bone pain hit me for 6.  It feels like flu and nothing eases it at the moment.  Codeine and Paracetamol, ibuprofen, takes away the shooting pains but it's dragging me down.  Can't sit for long, can't stand for long, can't lay down for long, constantly fidgeting.  I just wish it would ease.

 

My mouth is so sore.  I don't have ulcers, and have been using Corzodyl mouth wash since on FEC, but it's worse with this.  I am going to speak to the district nurse I think tomorrow and have a chat with her.  Like you, the chemo line are brilliant but just say regular painkillers 😕

 

I had all sorts of things with FEC regime but everything was manageable with antibiotics, penicillin (recurring chest infections and UTI each cycle grrrr) and I worked in week 3 of each cycle thankfully, as sick pay isn't great.  But the initial onset of effects on FEC were not this harsh.

 

Hope you get some relief too soon, I know we're not alone in all this but sometimes you feel you are don't you xxx

Michy1960
Member

Re: Docetaxel Joint Pain

This is so helpful and I'm definitely going to ask about this! 

Jemma_Michelle
Member

Re: Docetaxel Joint Pain

I've had my first docetaxel on Tues ( after 3 FEC doses which all left me hospitalised with kidney function problems and extreme pain) ........
Now I've been in absolute agony for 48 hours.... I called the chemo team and they said as long as my temp is ok the pain needs to be managed well.... But I'm taking codeine/paracetamol & oramorph given to Me by my Oncologist and I'm still in so much pain I'm in tears......
Seeing my Oncologist this week and will be pleading with him to give me something more appropriate for this level of pain :(..... Feel so helpless right now, so down
Dexter darling
Member

Re: Docetaxel Joint Pain

I have my first dexataxol on Friday and I am So scared. What shall I ask my onc for to
stop these side effects. Also if I have my chemo Friday when should I start to feel better. When I had fec a week after I was feeling ok is it the same with this. Thankyou x
Dexter darling
Member

Re: Docetaxel Joint Pain

I'm having my 1st dice taxol on Friday. And very scared after reading your experiences when I see my onc before my treatment should I ask for something to stop these side effects if so what should I as for. Had three fec just got used to that. Do you get a time in the cycle when you feel well like you do with fec x
Joecasey
Member

Re: Docetaxel Joint Pain

I was told to just take my temperature before taking the painkillers. Also had back pain and being in pain makes me miserable so definitely take them! Call your nurse at the oncology/breast care centre they are great at helping and getting docs to help as well. Hugs to you and daughter🤗
Joecasey
Member

Re: Docetaxel Joint Pain

Hi all just finished my docetaxel and found that the joint pains/ aches weren't well controlled with paracetamol/ ibuprofen so chatted to my oncologist about neuropathic painkillers ( I was having a lot of burning/ hot foot pain at night as well as the muscle aches ). She put me on pregabalin which was great and really helped make me feel nearly normal as I could get some sleep again.  Still having fatigue, but hopefully time will sort that out. Obviously everyone has different pain but for nerve related pain it may be an option for you, chat with your doc🙂

Toni H
Member

Re: Docetaxel Joint Pain

Hi, I'm on day 7 of my first cycle of Docetaxol, and it's been so helpful reading people's experiences as I don't feel like I'm the only one!

i am going to try alternating the paracetamol and ibuprofen, but last time I took paracetamol and codeine (longer before I started chemo) I was very sick so am a bit wary of that. No one has prescribed me anything stronger. I just wondered if anyone had any tips about what I can take to help with sleeping? 

Toni

Sylvia
Member

Re: Docetaxel Joint Pain

I'm on Taxotere as well, feel very sick and wanted to know what is good to eat?
Thank you, Sylvia
Oliver2005
Member

Re: Docetaxel Joint Pain

Thank you for your advice, I am on day four of docetaxel I now have back pain but up to now havent taken painkillers cos Im scated of spiking a temperature .Ive found it makes me very sad aswell I am a single parent with my eleven year old daughter who supports me .Thank you for listening.

Guest user
Not applicable

Re: Docetaxel Joint Pain

Hope you are getting through it all
For your info - more a future note rather than any use in your treatment, as you need the strong meds just now - there are alternatives to ibuprofen, I am allergic to ibuprofen but can take a very similar drug in the NSAID family called dichlophenac, which has the anti-inflammatory properites (unlike paracetamol) so is great for joint pain. It is sold over the counter under the brand Voltoral, but my GP gave me a load of it on perscription as Voltoral is rather pricey.
Hope you don't need it!
Vx
Guest user
Not applicable

Re: Docetaxel Joint Pain

I'm pleased to report that it does get better and that I am now through the worst. Here are my top tips which I have also put into my first post. I'm not a doctor and I'm not advising you, just telling you what I did 🙂
The support and practical advice above was a lifesaver.
Little Bear - sad you are going through this but happy you have found this forum. It was pretty bad but it didn't last more than a few days. I hope that your experience will not be as bad as mine and I hope that the points I've written below are helpful.
1. It does pass - you just have to get through it.
2. Proper pain relief is essential - ask your oncologist or your GP for something at least as strong as dihydrocodeine - Tramadol if they will give it to you.
3. Paracetamol and ibuprofen can help but they are nowhere near strong enough on their own. If your doc won't give you a codeine based painkiller then if you mix the full does of paracetamol & codeine with the full dose of ibuprofen and codeine, the codeine adds up to about 30mg which is a half dose of the good stuff.
4. As soon as you start to feel joint or limb pain, take the max dose of painkillers and keep taking them every 4 - 5 hours in daylight hours. The info leaflet in the box will give you the real maximum dose, which may be higher than your Dr has prescribed.
5. Keep on top of the pain, easier and lower dose to keep topping up than to deal with an outbreak of pain.
6. My partner had a bad cold and I felt ill as well, so I took paracetamol only every 8 hours so that I could keep an eye on my temperature.
7. Stay in bed on the bad days - it feels like flu, so treat it as flu.
8. I found that a warm bath helped, but if the water was too hot (how I like it normally) if made the joint pain worse.
9. Rest the joints. They are inflamed - so don't stir them up further by going for a walk. But when the pain has dropped then get moving again.
9. Other things I found on the web - take Clarityn, drink tonic water for the quinine. I did those and who knows if they made a difference.
10. Read about other people's exprience with chemo - after I did that I realissed that this really would pass. that stopped me from panicking so much and actually when I relaxed and stopped panicking the pain was not so bad.
Guest user
Not applicable

Re: Docetaxel Joint Pain

Hi! Starting Docetaxel in a couple of weeks and trying to get myself prepared! Thanks for all the pre-warning and advice, no doubt I'll be back on then for inspiration from you brave people who have already been there. Thank goodness for this forum, good luck to you all xx
Guest user
Not applicable

Re: Docetaxel Joint Pain

tramodol hun that works for me with paracotmol in between the pain is horrid but im on second one now and not as bad as first ..xx
Guest user
Not applicable

Re: Docetaxel Joint Pain

I'm sorry your having such a tough time Fiona, that sounds really bad. Speak to your onc, I know people who's steroids were gradually stopped instead of just stopped and that apparently helped. I got strong cocodamol from my gp that def helped and when I spoke to my onc she told me not to be a hero, take what you need when you need it. It def gets better I promise and I'm on my second lot and found the tiredness worse than the pain second time round. A hot shower helped me, plus hot water bottles, lying down, not pushing it too much, having some energy drinks helped too. It's a hard one for side effects with the pain and mouth issues and stomach issues!
Guest user
Not applicable

Re: Docetaxel Joint Pain

Such great advice. Thank you so much. You are so right about starting to take painkillers before it starts. I'll know to do that next time. Thank you. It was great to be able to have this online conversation.
Chico
Member

Re: Docetaxel Joint Pain

I would also start on the painkillers early, I would have my treatment on a Tuesday and by Friday midnight the side effects would kick in so I would start the painkillers Thursday night, and build them up, then by Tuesday/ Wednesday I would start lowering the dosage, you must keep on top of the pain because when it gets a hold on you it's really hard to cope especialy when you have all the other side effects. X

Guest user
Not applicable

Re: Docetaxel Joint Pain

Hi ladies
I have my second dose of docetaxel tomorrow. I saw oncologist today and complained bitterly about side effects. My main problem was diarrhoea (for about 10 days), I did have joint/muscle pain but believe me even that pain was overshadowed by the tax trots. I digress - after my first dose I was given tramadol by the chemo nurse along with the booster injection (to be administered by me) - didn't ask for the tramadol so I assumed it was standard practice and did take them so probably helped in keeping pain under control.
They have decided to reduce my dosage from 100% to 75% so hoping things won't be as tuff this tine round (to be honest, when I spoke to onc she said that the team were reducing the dosage for most patients so I can only assume that others did their fair share of compaining) - onc also gave me Loperamide to help with trots. Over the past 3 months I have taken more pills than I have during my lifetime (and I'm 65). I was probably a bit of a martyr in that I would just suffer thinking I'll take a pill if it gets any worse, not any more I take them before the pain starts. They told me this after my mastectomy, take the pills, don't wait until the pain starts, easier to control before rather than get rid of it once it starts.
May all your SEs be minor. Take care all.
Maggie
Maryland
Member

Re: Docetaxel Joint Pain

Hi......assuming this is your 1st Docetaxel? If so, the start to take painkillers - i alternated paracetamol/co-codamol and ibuprofen/voltarol every 2 hours (check with your team) - 2 or 3 days before your next chemo. This worked for me, and I felt much less pain 2nd and 3rd time. Also if you have had another chemo regime before TAX the pain is exacerbated as the other chemo is still in your system, and if you have the GCSF white blood cell boosting injections, this also makes the pain worse :(. Great news about your biopsy 🙂 i am 3 months post chemo and feel great with a few minor side effects that will eventually abate....but itnfeels like a dim and distant memory......good luck xo

Guest user
Not applicable

Re: Docetaxel Joint Pain

Thanks everyone. Just back from hospital. Surgeon told me to take paracetamol and I just broke down and cried. Eventually he agreed to give me 3 days worth of codeine. BCN was lovely and said to ask the oncologists for something beforehand next time.
Best news though. My biopsy was clear.
applestreet
Member

Re: Docetaxel Joint Pain

sorry...forgot about the effect on the taste buds...what we have to put up with...

smc78
Member

Re: Docetaxel Joint Pain

I had this with my 1st Tax 2 weeks ago and just like you tried to survive without pain relief but it got too much and at 3.30am on a Saturday the pain in my knees was agony. I took paracetamol that i had at home then in the morning went and bought Ibrufen. By mid afternoon i had called my hospital to ask what else i could take and they told me to call out of hours doctors and request something as you cant buy anything stronger over the counter. I was given Codeine but the lady said if that didnt work i could try Co-codemol or Tramadol. The Codeine seemed to make it more manageable for me but it took me 2 weeks to recover from that dose. My side effects included nose bleeds, oral thrush and mouth ulcers as well as the usual bone ache and loss of taste buds. Hope you feel better soon.
Chico
Member

Re: Docetaxel Joint Pain

Hi Fiona , I was admitted hospital with the pain while on tax , like you it was agony I was demented with the pain and lack of sleep, they put me on morphine but it took afew days for it to take even the edge off, I think you might find out its nerve pain and not joint/muscle pain, just a week or so after I finished rads the pain came back wasn't sure if it was herceptin or Letrozole causing it, the consultant told me to take evening primrose!!!Grrrr don't think she was taking me seriously as nothing seemed to dull the pain,in the end went to ,y GP and she thinks it's Peripheral neuropathy caused by the chemo and meds she put me on Gabapentin And the difference in only a few days is such a relief, so maybe have a chat to your BC nurse or onc as it might be nerve pain and not muscular. Xx

Guest user
Not applicable

Re: Docetaxel Joint Pain

Ladies, thank you so much for your advice & support. It means a lot. Thank you. I really mean that. xx
applestreet
Member

Re: Docetaxel Joint Pain

My prescription off the doc was tramadol....

lottie63
Member

Re: Docetaxel Joint Pain

My doctor gane me Tramadol for the Tax pains, they are dreadful so feel for you x take whatever gets you through its not the time to be a hero 🙂 I hate taking pain killers but could not have survived tax without them, it does get better hun x

applestreet
Member

Re: Docetaxel Joint Pain

AAAAARRRGGGHHHH!!!!...the tax truck!!!!!...it hit me after 3 days....had first tax on a tuesday and felt OK...felt OK weds...thurs....then on the friday morning I got up and had been run over by a steam roller..hit by a train..I was in agony....as RR says don't be frugal with the pain killers...I took ibuprofen as it was all I had in the house but got stronger pain killers from my onc...Please mention this to whoever you are seeing this afternoon as you need all the help you can get to keep the pain under control...if it's any help..my second and third tax were not as severe with the se's as the first one...keep an eye on your feet as well as I had a burning sensation in my feet and a lot of the skin on the soles came off after 2 weeks...best wishes..M

RoadRunner
Member

Re: Docetaxel Joint Pain

Take the maximum strength of whatever painkillers you can tolerate - if necessary get some strong ones from the doctor. Don't wait for the pain to come back before taking the next dose - it is much easier to prevent pain than to deal with it once it is there. This might not be much help this time, but for your next tax anticipate the pain and start taking the painkillers first. This is not a time to be frugal with the pain meds, take them regularly, as often as allowed, for a few days, to get you over this part of the cycle.

stressy_messy
Member

Re: Docetaxel Joint Pain

Hi,sorry your having the bad pains,I had the same when I was on docetaxol I was given co-codamol and although they made me very sleepy and a bit spaced out they really helped with the pain.Really hope the pain eases soon,and good luck with your results.All the best Melxx

Guest user
Not applicable

Docetaxel Joint Pain

Does anyone have any tips for surviving this? Up to bedtime yesterday I was saying that I was coping really well with no side effects. Then I woke up at midnight in agony - from a nightmare that I was being tortured. The pain was just extraordinary. I think I had a panic attack as well. I woke up from sobbing in my sleep.
I can't take Ibuprofen, my partner has a bad cold so I'm keeping an eye on my temp which limits how much paracetamol I dare take. Luckily I had one lorazepam left (given them to take with the steroids) and a couple of codeine from my SNLB. That gave me 5 hours sleep before the pain woke me up again. Like the worst sciatica down all 4 limbs, and every joint feels like it has been hit with a baseball bat.
I've tried warmth, tonic water, mindful breathing, keeping moving, and also the above drugs. Any suggestions for what I can ask the doctors for to help me get through this? I took my last codeine at 6 this morning. I have a check up at the hospital, to get my SNLB results, this afternoon.
I know I can get through this, I know it will pass, I know that it is worth it. I want to live. But I was demented with pain last night and earlier this morning. I'm still in the kind of pain that even a toughie would take painkillers for, but it is a lot lot better than it was.I'm scared of what will happen when this morning's codeine wears off. So 2 questions:
What can the doctors give me? What else can I do to bring the pain down? I will try anything!

EDITED A FEW DAYS LATER:
I'm pleased to report that it does get better and that I am now through the worst. Here are my top tips which I have put right at the top of the thread to make it easier to find. I'm not a doctor and I'm not advising you, just telling you what I did 🙂 The advice & support below is lovely, but if you have found this as a result of the kind of searches I was doing hysterically on Sunday night, here's the summary:
1. It does pass - you just have to get through it.
2. Proper pain relief is essential - ask your oncologist or your GP for something at least as strong as dihydrocodeine - Tramadol if they will give it to you.
3. Paracetamol and ibuprofen can help but they are nowhere near strong enough on their own. If your doc won't give you a codeine based painkiller then if you mix the full does of paracetamol & codeine with the full dose of ibuprofen and codeine, the codeine adds up to about 30mg which is a half dose of the good stuff.
4. As soon as you start to feel joint or limb pain, take the max dose of painkillers and keep taking them every 4 - 5 hours in daylight hours. The info leaflet in the box will give you the real maximum dose, which may be higher than your Dr has prescribed.
5. Keep on top of the pain, easier and lower dose to keep topping up than to deal with an outbreak of pain.
6. My partner had a bad cold and I felt ill as well, so I took paracetamol only every 8 hours so that I could keep an eye on my temperature.
7. Stay in bed on the bad days - it feels like flu, so treat it as flu.
8. I found that a warm bath helped, but if the water was too hot (how I like it normally) if made the joint pain worse.
9. Rest the joints. They are inflamed - so don't stir them up further by going for a walk. But when the pain has dropped then get moving again.
9. Other things I found on the web - take Clarityn, drink tonic water for the quinine. I did those and who knows if they made a difference.
10. Read about other people's exprience with chemo - after I did that I realissed that this really would pass. that stopped me from panicking so much and actually when I relaxed and stopped panicking the pain was not so bad.