Hello Anyone else out there with terrible muscle pain a week after carboplatin?

It's a while since there have been any comments on this problem, and was wondering if any of you eventually had a solution or diagnosis or treatment. I had one dose of carboplatin 10 days ago, then after a week this terrible pain started in the backs of my legs and arms. The pain when I stand still just makes me want to moan and groan aloud. I've even to sit down to clean my teeth as I can't bear the pain standing for that length of time. How on earth do you simple things such as checking out in a supermarket? Doing the actual shopping would probably be ok.

The Hospital Help line suggested paracetamol, but that hasn't worked. They also said it probably wasn't due to the carboplatin...but there are a number of us who would disagree. My GP said he didn't know what it was, though he has sent blood off for a muscle breakdown test. He also prescribed Phorpain gel to rub onto the legs and arms. Apparently this takes up to a fortnight to work.

Ouch! Ouch and Ouxh again!

Christine

Where do I go from here?

25 Replies

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  • Hi Christine,

    I am sorry I am not much help... Having had chemo twice....I can sympathise with you.. as I had terrible aches and pains..(and I still do)..but I am not very good at taking pain killers ....so I just put up with it....jumpy/ achy legs worse at night...I did use heat pads though ie hot water bottle/ microwave pads/ electric throws etc I find putting heat where it hurts works for me.. .like I said I still get pains but not as bad as when I was on chemo...but then I gave up on shopping (my husband does it) .....you could always give the Ovacome helpline a ring they might be able to help tel 08453710554 ..and speak to Ruth Payne (support nurse)...

    Best wishes love x G x :-)

  • hello Gwyn

    Certainly a hot shower eases the pain and standing in the shower is possible once the water's got going. The pain is beyond the grin and bear it. The hysterectomy was a walk in the park pain-wise. yes, that hurts, but nothing like the intensity of this muscle pain. I've also had arthritis for 40 years, and only take painkillers if I'm having a bad flare-up. over the years I've built up skills to deal with arthritis pain (mostly based on mind over matter and relaxation), but can't get my head round how to do it with these pains as the pains go when I sit down or go to bed. Not sure how to relax whilst standing up! Walking is good and I'll try other warming objects.

    Really sorry to hear you still get the pain. It would be more do-able if I knew it would cease when chemo finishes.

    love Christine

  • Hi Christine,

    I am sorry your pain is so bad, I think it won't be so bad when you've finished chemo I didn't mean to make you feel worse...there is stronger pain relief they can give you I am sure...it is getting them to realise you need it..have you got a specialist nurse you could talk to? as she can help...I had pain for over a year...the tumour I had was touching the nerves in my back..and giving me pain in my hip, groin and down my leg but my oncologist kept saying that I might have arthritis but of course I didn't it was the tumour I was later to discover, I bought a tens machine that seem to help with that...but I only used it for a short time..... as then it was confirmed that I had a recurrence...the both times I was on chemo I had agonising muscle pain and I really think that is more common than what we think...I even came out in bumps they were very painful.....the only thing that eased me was direct heat but I know everyone is different...I hope you will get help soon love x G x :-)

  • Hi,

    I too have bad pains in my legs after chemo, I was scanned for a blood clot last week, but was told my leg was clear. I have looked at a web site re aching legs due to chemo and it recommended potassium rich foods and lots of fresh fruits the week prior to chemo. So I have just had a large bowel of fruit, figs and prunes lets hope this works. I will try it for a week and report back. I am also taking pain killers at night as my legs hurt when I'm in bed. Lets hope we can find the answer to all our aches and pains Love and Hugs Babs x x x

  • Hi been on the web again this morning and something else that has been suggested is tonic water, they say drink one large glass in the evening. Its strange all the side affects we get but I will try anything to get rid of my aching legs. Babs x x

  • Hi Bab,

    I drink tonic water for my restless legs..and it does work...I remembered only last night how I also get what I call foot slapping syndrome..I used to slap my feet on the ground when I walk, my friend who also had OC did the same thing (I noticed her doing it)strange?? I hope you're ok love x G x :-)

  • Hi Gwyn,

    Just got back from Asda with 4 bottles of tonic, potassium rich foods and 4 cans of Guinness. I will try anything to stop the pain, The guinness is for my iron levels I remember drinking Guinness when I was pregnant as its supposed to be good for you. This has been my worst week so far had chemo No 3 last Wednesday and it knocked me for 6 had 4 days off work. Its my legs that hurt this time round and I feel really tired. I went back to work yesterday but I'm finding it hard. Got my scan on Wednesday 15th to see if the tumour has shrunk enough to operate. If it has not then have 3 more chemos booked, keeping my fingers crossed .

    Love and Hugs Babs x x x

  • Hi Babs,

    Sorry that you've had such a bad time, chemo has a cumulative effect....I can sympathise as I've been there...but you will get through it....so hang on in there sending you my love and best wishes x G x :-)

  • Dear Babs, I hope the tonic does the trick for the pain. Apparently it contains small traces Quinine which has anti-inflammatory properties. As for your haemoglobin count, I'm afraid Guinness or any other iron supplement won't help as it's not that your blood doesn't contain iron, it's that the haemoglobin cells which usually carry iron have been depleted by the chemotherapy. It's terribly frustrating and disappointing to find the counts are down but it's very common with carboplatin.

    Meanwhile I think you should enjoy your glass of Guinness. I also used to drink a little Guinness when I was pregnant. Of course it's all bad news these days - but it was certainly effective to maintain iron levels as it contains folic acid which helps with the absorption of iron. That along with your fruit which contains Vitamin C will maximise the effects of the iron supplement once your haemoglobin recovers.

    Good luck with the scan next Wednesday. I'll be thinking of you and hoping for good news. xx Annie

  • Hello Babs

    Very glad you don't have blood clots.

    Your suggestions soun very do-able so I'll now go hunting for potassium rich foods - bananas are one, don't know what else. And tonic water. I haven't drunk that for years but will get some this afternoon. The last time I had cravings for it was when I was expecting twins 28 years ago. Happy days - one of them is getting married on the 18th. I'm also going to ask my physio who I started seeing a few years ago for the arthritis. She certainly helps keep the arthritis more under control. I'll let you know how I get on.

    Like the typo 'a large bowel of fruit' that's one area where we'll get an effect with loads of fruit!

    Love Christine

  • Hi Christine,

    Re potassium rich foods, I looked it up on the web and they include all types of beans, hummus, figs, dates, peanuts, apricots, raisins, potatoes. I went to Asda after work this evening and stocked up on all these things. I also bought 4 cans of Guinness to boost my Iron levels. Not drunk Guinness since I was pregnant, my Mum used to make me drink a bottle every Sunday. Its not as bad as I remember in fact its quite nice.

    Hope these foods help I think I would eat coal if they said it would help with all the symptoms we get with this OC.

    Love and Hugs Babs x x x

    PS Have a lovely day at the Wedding

  • Dear Babs, Mackeson is slightly sweeter if it's the bitterness of Guiness that doens't appeal. x

  • Hi Christine,

    Hope you are ok...the registrar at my hospital was doing research into side effects of chemo..as part of her qualification to be a consultant...and when I was diagnosed the first time (recurrence now) there was a young registrar who was going off to Cambridge to do research into this as well..so I guess they are trying to research this... but not sure whether it gets them anywhere..

    the problem is I feel they won't admit to the patient (us) that it is a side effect and as it is you would think that they'd come up with something that would alleviate the pain..I do hope the pain has eased now love x G x :-)

  • Hi Gwyn

    You've got it right - neither the oncology side nor the gp side wants to own it as their problem to deal with.

    The Phorpain, which is an ibuprofen gel my gp prescribed has certinly reduced the pain, but of course hasn't got rid of the source of the problem. I rub it on twice a day.

    Worth you trying it?

    Love Christine

  • hi Christine . I too have really bad joint pain after chemo mainly to back and legs and worse at night . Please discuss with nurse as they should be able to give something for it . Babs love the typo that bowel of fruit may not help the joint pain but at least other things may not be soo much of a strain lol

    Love

    Ally xx

  • Got to say the fruit has not helped the legs so far, but everything else is going smoothly (if you know what I mean) I have just taken 2 Codeine Phosphate, which I must say have worked on the leg pain. So I will keep the fruit thing going as last time I was on Codeine I did get rather constipated.

    Lets hope we all have a peaceful night, off to the coast tomorrow with my daughter and 3 of our wonderful grand kids. It will be tiring but fun.

    Night Night to all the brave ladies out there Love Babs x x x

  • If it gets us to eat more fruit at least some good is coming out of this predicament. Hope the trip out went well

    Hugs Christine

  • Hi there Christine...

    During chemotherapy and afterwards, I found that I had pain and weakness in my arms and legs too. Actually, everywhere really, but those parts really stood out when walking. I too found that standing still, for example when I bumped into someone and they wanted to talk, was difficult and often I just wanted to say I'd like to find a bench or something, but it doesn't work like that does it because often people are in a rush and don't want a half hour chit chat. I'd say that the pain starts off as discomfort, then turns into an absolute need to sit down somewhere and that feeling has never gone away even though I'm now 11 months post chemo. I'm not sure if it's the illness itself or the effects of chemo but I just try to take it easy and not be too hard on myself. My oncologist asked me if I suffer from anxiety and I think it would be odd if I didn't but the walking thing is hard for me and I know the physical symptoms are real. I don't really care whether the oncologist believes me or not. All I know is that my abdomen isn't in a good state as my oncologist told me herself and I think she'd feel the same as I do if she were in the same position. Perhaps she was just thinking that maybe, yes I do have the pains but that the pains bring on anxieties too. I'm not sure. Either way, I quite understand how you feel Christine. Good thoughts are sent your way.

  • Hi Tina,

    I agree with you standing still is worse, and I can't even stroll or walk slow I have to go at speed then stop and sit on a bench,I am now a professional bench sitter, haha. It is a bit annoying when the medical staff try and find some other excuse for it when you know full well what has done it..that's why I wrote my poem on therapy ( recently posted) as it is such a stupid word for chemo (therapy) but it does help to know you are not alone... as far as symptoms are concerned too many of us get the same for it not to be chemoTHERAPY love and best wishes x G x :-)

  • HelloTina

    I feel for you and your certainly not anxiety induced pain. It really bothers me that no-one in medic world wants to get to the bottom of this. Once I'm clear of the chemo by a couple of months I think I'll do a mega pester session with my GP. There must be someone somewhere to be referred to as a starting point even though it may not be the correct person. Unfortunately as I've only had one dose that's some time off.

    Hugs Christine

  • Hugs to you Christine and to all here... it's a rubbish illness isn't it? Good job we've got each other. :)

  • Hello Tina

    Rubbish it certainly is. My daugher's getting married in Hammersmith on the 18th and as we live near Manchester, planning the trip involves finding the nearest A&E. My immune system was already suppressed because of other medicines. I'm only 2 weeks in from the first lot of carboplatin and already have had 2 lots of antibiotics. I had thought the challenge from chemo would be sickness and feeling Horrible, but that side of things has been ok. Better check my temperature again... and again.

    At least the weather's nice, so I'll have another afternoon enjoying the shade.

    Love Christine xx

  • Hi Christine...

    Will be thinking of you on the 18th. I've ordered 23 c, a light breeze and light whispy clouds especially. ;)

  • Hi, the one medication we were warned off by the oncologist whilst having chemotherapy was paracetamol. We were told it could mask any temperature rise due to an infection. Codeine based painkillers seem to be the order of the day, with its own particular side effect. Perhaps I should say codeine and senna - the smooth alternative.

    Regards and best wishes, Trevor

  • Thanks Trevor.

    Alas, codeine makes me vomit profusely! I've gone for the pro-active massage from physio plus stretching exercises, so for the moment the pain has gone. However, I've just had a second dose of carboplatin, so await with interest... I've also got a tube of Phorpain, which is ibuprofen gel, from the gp so hope I'm better prepared this time.

    Christine

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