Hi ladies
I finished chemo nearly a year ago now, but ever since Taxodere I have suffered from aching bones, joints and muscles which has been getting worse. My doctor has run loads of tests, and can find nothing wrong, I take co-codomol when the pain is bad, but i don’t want to be on painkillers indefinately?
Has anyone else experienced this, or do you have any suggestions, right now i will try anything!
ps my cancer was triple negative so I’m not on any meds at the moment
xx
hi nat i too am trip neg and finished fec/tax in march but due to fast recurrence am now on capecitabine but i too ache very much and am sure its mostly from tax first thing in morning my feet are so stiff and achy, i get bachache ,shoulder ache ,hip ache, painful knees,and of course my mind goes into overdrive but yes i know how you feel, used to love walking but so achy now cant do much and all at the ripe old age of 45, hugs rachel xxx
Hi Nat and fairy queen I have very aching legs and feet, the pain seems to come more at night, still taking painkillers. It makes me feel very depressed after all the treatment, just hope it gets better.I too had Tax/fec in march followed by mamoplasty and 32 Rads x x fidgit
hi fidgit it certainly does seem a common side effect,the gift that keeps on giving lol, hugs xxx
I had extreme joint pain and breathlessness on taxotere and had such a bad weekend after the first dose I was convinced I would have a heart attack. I have quite a high pain threshold, but this was agony and I was hysterical. The only thing I could get relief from was Tramadol which left me like a zombie. During the 4 cycles I had I was only out of bed to go to the hospital for more treatment and check ups and I ended up in isolation at the finish with no immune system and a severe chemo burn to my hand and wrist as the last infusion punctured a vein. They say it is one of the hardest drugs to tolerate and my oncologist said not all patients can tolerate all the cycles so I was lucky. I had done fine all the way through FEC and rads, but it was Taxotere that made me look and feel really ill. If I made it downstairs I couldn’t get back up unaided. People were shocked by my appearance.
I’m 4 years on from taxotere now and I still have problems with my left knee. I go to the gym 2 or 3 times a week, walk, and have recently started a yoga class - the yoga stretching really helps, I also found very gentle yoga helped when I was in recovery. It does get better but you have to try to work with it via low level exercise for improvement if you can.
My neighbour was given Taxol for ovarian cancer last year and could barely walk. They stopped her treatment as they were worried she was going to end up in a wheelchair. She’s had to give up a driving job for a desk job and is going to the gym regularly to help her joints. Some days she is on an elbow crutch for stability.
Thanks Ladies, as always its good to know that you’re not the only one to be experiencing this! I’ve found that exercise certainly helps and swimming.
Taxotere is a b****d of a drug, but i also know it offers us the best chance of beating the cancer - i just didn’t expect to be still suffering side effects after so long
xx
Hello Nat
Yes, It is useful to know that I’m not alone here.
Also triple-neg and finished the chemotherapy end of June. I ached very much on tax and the prescription co-codamol was the only thing that had any effect. My legs are still painful though it’s difficult to know if it’s arthritis getting worse or still the tax effect. I have my final(?) visit to the oncologist this week and I will pursue it. Like you, I want to be able to walk easily but I don’t want to be on strong painkillers as a matter of course.I’m only 2 months on from the tax and have great sympathy if it’s still bad for you a year on. And fairyqueen 4 years on… Like fidgit it’s worse at night and I do try to exercise.
It’s all there to help us, I know, so I’m not complaining exactly. It does help to know this isn’t uncommon - though I wish very much you weren’t suffering too! xx HP
After my EC cycles, I was switched to 15 weekly Tax cycles. After only 10 of them, my pain is so intolerable that Tax has been suspended for the time being because my Oncy warned that if they continue the chemo, then my pain could be permanent.
How bad is it? the ladies above said that Tramadol or Co-codes fixed it. I’m on morphine, 240mg of codeine a day, paracetamol and Gabapentin. And it doesn’t stop the pain, it only takes off the edge.
I’m worried that:
(a) stopping the chemo early will lead to a more morbid prognosis
(b) I may have permanent pain anyway, reading the above!
BC - the gift that keeps on giving…
Hi Ninja
You have my utter sympathy: it sounds truly awful. I have no knowledge of this kind of thing and I guess the people who will know will be the oncologists. What about the one-to-one nurse discussion that one can have with the BCN or on this or the MacMillan site? Might they help with guidance?
When my pain was at its worst I couldn’t sleep or think, but it was temporary. I learned to take the painkillers (cocodamol and then ibruprofen alternately every 2/3 hours) in advance of the pain arriving and backed it up with red wine and whatever food made me happy. Yours sounds much worse than that and I wish there was a way of giving you comfort. All I can say is that people will be sending you their best thoughts and wishes. x HP
I never associated my pain with the taxotere until recently. I had terrible pain during treatment which was treated with co-codamol or tramadol and something else I can’t even remember what it was called.
I’m now 18 months on and have a number of problems. Each time I’ve tried to get myself fit it’s been a disaster. Started yoga and ended up with an achilles injury, I still have foot pain a year on. Wore a different pair of shoes and now have constant knee pain. My shoulder was bad post surgery but improved a lot, I went swimming and injured it more - now I have to start acupuncture with physio at the hospital next week .
I did have back and neck pain before but it’s absolutely terrible now.
I was absolutely nothing like this prior to the chemo. I used to love going walking - we’d recently moved to the countryside so we could more. I used to go swimming quite often too and did so at the start of my treatment. The physio did say that they are starting to research taxotere’s effects on muscles. I feel like my muscles/joints have been weakened by it so that they injure easily. Will it improve? - I really hope and pray it does because I feel like I’m over a hundred and I’m only 47.
I wonder if Tax can induce temporary fibromyalgia? because all this talk of joints/ligaments/muscles being too-easily damaged - I’ve had this since I was diagnosed with FMS 8 years ago. I’ve had to give up all sorts of sports due to constant injuries, even when Ive been in remission from FMS. Running meant that I had torn knee ligaments over and over, for example.
Ninja - I’ve just looked that up and I’m amazed at the symptoms. I suffer with terrible fatigue and headaches and have a lot of sensitivities (another symptom) also stomach problems.
Possibly chemo is a triggering event for FMS…
How did you get diagnosed? Elinda x
I was diagnosed 8 years ago after several months of crippling symptoms that led to my being virtually unable to walk and that led to my dismissal at work (I resigned just in time) for being in breach of contract, i.e. I didn’t go in as I was too poorly.
At the time, I was sleeping (un-rouseable sleep, almost like a coma) for 18 hours a day as well; another FMS symptom. I lost most of a year through being asleep like that.
I go through cycles up and down. It used to be good days and bad days. The cycles grow longer with time and are now up to 18 months long.
Chemo has been AWFUL in conjunction with FMS; I cannot describe the pain; it’s worse ATM than FMS has ever been before.
I don’t know if I’ll be able to conplete the chemo course. I don’t know how that will affect my morbidity %age.
I just feel “lost” in a sea of pain. I want to cry out for help, but don’t want to worry my family too much so I hide it a lot.
I am lost.
Oh Ninja that’s just horrible for you. I’m sure you’ve talked to your Onc about options. Could you have more EC if you weren’t so poorly on that? What difference would 10 cycles make compared to 15 etc.?
It’s so difficult isn’t it because being in so much pain makes the decision process really difficult too. It’s impossible to think straight. I hope the pain will start to ease off for you soon now the chemo’s stopped.
I can’t return to work because of my fatigue, headaches and pain and now my husband’s job is under threat. I can’t help looking back a few years to when I had a fantastic well-paid job and I was helping my family out financially. Now we’re counting every penny and every day feels like a physical struggle. Sorry I’m moaning, I blame it on the bl***y awful weather.
Ninja and everyone else who is suffering - let’s hope we do all improve soon.
Elinda x
Elinda, witter away, this is what this forum is for. I feel like a real Moaning Minnie ATM!
EC? <shudder> UGH. It gave me tachycardia, mucositis so bad I was nil by mouth, hypotension, dehydration, severe general malaise et al. I was supposed to have 4 of them but they switched after 3, I was so poorly and in hospital nearly every week.<br>
And it robbed me of my hair - I have 1.5cm of owl chick fluff now and I want to keep it. Fussy, aren’t I? ;o)</shudder>
Pre-2003, I was a ‘don’t walk up stairs if I can run up’ person with boundless energy. Where did all that energy go? Please may I have it back? Thanks.
Hi Ladies
Its really interesting to share experiences. As well as the pain, I’ve had big problems with my legs - all the muscles had wasted and the tendons had tightened up to the point where i found it difficult to walk any distance. I’m about to finish twelve weeks of physio, they said that i had ‘muscle weakness due to inactivity during chemo’. I’ve also had problems with my shoulder which i had strained but it refuses to heal. I was never convinced by the ‘inactivity’ theory, this all started with my first dose of taxotere, its like its attacked & weakened all my muscles, joints and tendons? Thank goodness the doctors are finally starting to recognize this!
Having said that, the physios have been brilliant & so helpful. My legs are now much stronger & i’m able to walk & even break into a trot occassionally - now if i could just get rid of the pain??!
My GP has convinced me to stay on the co-codomol (i don’t like taking them), and they do really help especially if i take regularly before the pain starts, but its not a long term solution.
A friend of mine has suggested homeopathy? has anyone tried this or something similar for pain relief?
Best wishes to everyone, keep fighting
xx
Oh im not alone with pains & aches all over like the flu with out the flu.I could sleep for ever.Im not on taxotere. jane
Hi Nat
Thank you for the link.
It’s a year today since I made may first visit to the breast unit of my local hospital (Peterborough). But my cancer was not diagnosed until Jan this year. I have lobular cancer which apparently is harder to detect, well it was in my case!
My chemo started on Feb 14th, I had 3 x Tax and 3 x FEC. Just before my 5th cycle I became neutropic and spent ten days on the onc ward. I don’t remember much about it but my onc told me I was very very poorly. My aches and pains started by the second Tax. They seem to ease off towards the end of chemo but about two weeks ago they came back with a vengeance! Before posting on here last night I was convinced my cancer had spread, I was really pleased when you posted the link to this thread and (unfortunately) you ladies are there with the same symptoms.
Mel x
Elinda; re our discussion previously:
I must say at this point that there are many reasons why there are symptoms similar to FMS appearing in various folk (not just the folk on here, I mean in general).
That’s why FMS takes so long to diagnose; everything else needs to be excluded first. The general symptoms of fatigue and aches/pains point to many, many diagnoses.
For example, I wouldn’t be surprised if many ex-chemo folk get (temporary or longer-lasting) ME; after all, the immune system is suppressed or the chemo wouldn’t work, no? Not unless they can develop a more targeted type of treatment.
FMS shares many similar aspects to ME but in FMS, the pain is worse and there are other, specific differences.
In the same way that dyspraxia accompanies many specific disorders like dyslexia and dysphasia, aching and pains accompany many other disorders of the body, some are auto-immune diseases, some are not.
Ninja - Yes, I was thinking that. I also looked up ME.
I do hope the physio will help with the shoulder, back and neck pain. I did feel like a lump of meat on a conveyor belt though when I was being assessed.
If things don’t improve with the physio then I will talk to my GP about the possibility of FMS or ME.
Mel - I too had lobular and mine wasn’t apparant at all until it was very large. I was too young to be on the mammogram programme but understand that that a mammogram doesn’t always pick lobular up anyway.
Nat - I thought about muscle wasting in the immediate aftermath of chemo. I was extremely weak during chemo (20 mths ago) and could barely walk so I thought it was possible. However, even though I’ve pushed myself to walk every day since I still have weakness throughout my body.
I’m not convinced on homeopathy but if you have the money to pay for it, it could be worth giving it a go. I did have acupuncture for quite a while to help regain strength etc but that didn’t do anything.
I’m glad this thread is here for all of us suffering at the moment. I can’t believe or won’t believe this pain,weakness and fatigue is permanent. I think some of us just get much more effected by the chemo and it can take a long time to get over. My Onc did say last week that even after all this time I could still be recovering from the chemo.