i had a lumpectomy in april 08 (twice as they never got a clear margin).
i then had 4 x fec and 4 x tax. rads was for 5 weeks.
the problem started when i got taxotere, 3 days after getting my first dose i had severe bone pain and this continued through the whole treatment. i was given gabapentine (not sure how to spell it) and that gave me really bad diahorrea, i had to sleep on towels.
i have had severe reactions to 3 anti cancer drugs and am now on extemesane which i seem to be ok with.
my onc has told my bcn that she doesn’t think that my pain/problems are due to the chemo. i also have nerve damage in my surgery side.
i have pain in my collar bone and shoulder blade which i have been told is due to the rads.
if i overdo things then i feel it…knackered!
i am in pain 90o/o of the time and have not yet found a pain killer that works. tramadol makes me very drowsy and i end up in bed. prescribed co-codamol as a similar effect to the tramadol.
i am reacting to everything.
occupational health said that i am unable to go back to work, and i know they are right and i have to accept it. i feel like i should never have had the surgery or treatment. i am feeling very very very low at the moment. i often have black thoughts. my boobs are uneven now, i have a big gouge under my arm from where they took out my lymph glands and that hurts. my daughter told me that i don’t laugh as much as i used too, and that upset her. I used to go to the gym and rush about my work and now i can only managed short walks with my dog and light house work. even now sitting here typing this i’m in pain.
please tell me if this has happened to you and i’m not the only one left with problems due to chemo and rads. if i can tell my onc that i’m not the only one left with probs like this them maybe she’ll sit up and take notice rather than just dismiss me. i feel like she thinks i’m a hypochondriact (sorry i can’t spell, maybe the moderators could give us a spell check!)
Hi there,
from the third paragraph of your post,I could almost have written it
myself,certainly as regards the pain being 90% of the time,also the tablets we are prescribed. I had my MX in May 09,NO WAY could I do a paid job of any sort,Id be reluctant to even do a couple of afternoons in a charity shop,Id be too unreliable. As regards my mental state,its good and as regards stamina,thats about 60% as it was pre op,but Im,like you in constant pain and I spend a lot of time doing sweet F.A.simply cos Id be in pain if I started anything. My docs blame nerve pain,it starts as soon as I wake when I put my arm in the sleeve of my dressing gown,it gets worse as I make the toast & coffee,then I take my Pregabalin(similar to your Nabapentin so my BCN said)which just takes the edge off the pain. It feels like someone is squeezing my arm muscle really tight,then I get a burning sensation in my armpit,then worst of all,its like my shoulder blade is going to burst through the skin of my back. I cant wear a bra for more than a couple of hours as my ribs are sore also. I was getting down in the dumps,at least the Pregabalin lifted my mood but if I stay up too late,it feels like Ive got a tight leather belt round my chest and that someone is tightening it up another hole every hour. I had the pain Ive described since waking from the op,the first time I got it was the first time I flushed the hospital loo,however it got worse after rads,Ive been told Im just one of the unlucky ones,youre not joking!!
Hang on in there,its a lot better than the alternative, love from Mags x P.S. dont even get me started on tiredness,cos Im like a wet lettuce in the P.M.,mainly `cos I wake up with the pain every time I change position in bed.
Hi Vodka! Maybe I should call myself Gin as that’s my preferred tipple! Gosh you’re having a bad time. I had a wide lode excision lymph node clearance in June 2009 followed by 6 x tax which made me very ill. I then had 15 x readiotherapy, finally finishing treatment late Jan 2010. It was during rads that I started getting joint pains and the doc first put me on paracetemol and codeine which didn’t help, I am now on Naproxin which I top up with paracetemol. Every joint in my body is painful and not just joints, it feels like all my bones and muscles. Some days are worse than others, no rhymne or reason to it, not the weather, not what I’ve been doing. I have been told that it is an after effect of the chemo, some get it during treatment, others like me, after. I’m in the 3rd month now and it’s getting no better, had a bad night last night (it’s often bad at night) and I was up at 2am taking painkillers, not much better today. I went to work as I’m trying to get back to normal but I felt every step, especially going up and down stairs, has left me feeling exhausted this evening.
There, does that make you feel better, reading someones else’s moan!! Oh, I forgot, I also have uneven boobs, about 2 sizes different, breast surgeon said he could do something about that but I don’t know if I can face it. As for memory - who am I?? So, no, you’re not a hypochondriac, or if you are, there’s lots of us on this website!! I see my GP again tomorrow so will be telling him all this, will let you know if anything useful comes from it. Also see the oncologist next week. Oh, and I used to be jolly and happy most of the time, now am quiet and introspect as I feel people don’t understand how I feel and that they’re fed up of my complaining about all my aches and pains!!
Hang on in there, it can only get better - surely???!!
Hi there
I feel for you…
I have one taxotere to go (thankgod!), but i am also worried about how damm tired i am at present!
I am exhausted alot of the time,which i find really frustrating, as my children are only 2 and 5!
I also have some muscle aches and pains (just taking parecetemol and ibroprofen at the mo.).
Also have a a terrible mempory and feel fuzzy headed!
I am just hoping that things improve, and i really do hope they do for you too…just hang in there!
Hi Vodka, Mags and Dae
I am sorry that you are all suffering too, you are certainly not alone and thank you Vodka for starting up this thread and as you probably remember we were both having treatment at the same time. I am sick of hearing myself complain about this ache or that ache. I would describe all my pains as constant nagging aches : my back is the latest but I have pain in my knees, my shoulders (even good side), my hands and sleeping at night is painful because I just can’t get comfortable on either side, BC side my arm is throbbing and other side is just uncomfortable. I am actually going to see my Dr on Friday to talk about these pains, it is the back one that concerns me the most for obvious reasons (brain doing overdrive).
I’ve had one thing after another since my BC, although the tiredness has been better for a few days now so I am assuming that the thyroxine has finally kicked in. Life is quite hard, I feel and look like a haggard old wotsit (no offence intended) and I can’t manage more than simple housework and a little bit of cooking. I enjoy walking and try to walk as much as possible, however, I am still putting on weight instead of it coming off which I don’t think helps the aches and pains.
I was on Pregabalin but after almost a year of taking it and it wasn’t really working I decided to stop so now when I have bad days I just take co-codamol/ibuprofen or tramadol which helps.
My Onc told me last Dec that the effects of chemo would have worn off by now and out of my body, if he is right then what can I blame? Like Dae says, no rhyme or reason to it. I’m even beginning to think that my lopsided unsymmetrical body might be the cause, with one flat side and one size 38 FF it wouldn’t be surprising. So another member joining the aches and pains thread. My memory is terrible too.
Naz good luck with finishing your treatment and hope your pains are just a minor blip.
Sorry, another rant from me here.
Sorry but it is a relief to read that everything running thru my head is not just me being … (too many words I could end that sentence with!!). I finished my treatment in December 09 (WLE, 3 FEC, 3 TAX, 18 rads 12mth herceptin) at the moment I have pain in my left arm BC side and am constantly worried about Lymphedema, while I am typing this I am looking at my right hand and it looks really swollen, my back and knees are also aching my legs feel like a dead weight. I no longer like to say it out loud as I feel everyone will think I am just looking for attention as I am no longer ‘sick’ but I still need it to be about me, which could not be more further from the truth. My weight is going up and up, I thought oh well I’ll get cancer and lose a bit of weight but NO thats doesnt happen either. I feel I have aged another 10/15 years in the last 2, its so tiring just putting o a brave face that I am totally exhausted. I also hate the fact that I am totally lopsided too and feel that everyone else can see it. I dont want to go to GP or BCN as I feel they will think I am just paranoid about everything.
I’m sorry to go on but as I said it is much easier to put it down here than say it out loud.
Hi,
Can I please join in. I had my op exactly 12 months ago followed by 30 radiotherapy (turned down chemo as it only improved my 10 year survival rate by 1%) and am now on Tamoxifen for 5 years. I thought I must be the only one to still be in pain, collar bone, across chest, under arm and down arm, really hurts to lift anything and still soooo tired. I am so glad that I am retired and do not have to do anything if I can’t but I never envisaged my early retirement would be spent feeling old and lifeless ! I’m only 53 and have now been diagnosed with Crohns Disease which is uncurable and just adds to the feeling of being ancient.
Sorry for the moaning but it really helps to let it out on hear as I hate to keep on about it to my husband. Though he has been excellent throughout.
Thank you for listening and good luck to us all. Best wishes, Jan xx
Thank you all for your comments, i glad that its not just me - not that i’m glad anyone is suffering but you kow what i mean! I thought i was going NUTS! I kept telling my OH that it was probably mind over matter as the onc said i should be ok by now. so i would try to do things (too much) and would end up suffering alot. so now i do what i can do and rest when i need to. I think the more people that leave comments on this topic then the more sort of ammunition we can have to give to our onc’s so they will have to listen to us rather then just dismiss it all. Sorry for babbling!
Hi Peacock, yes i remember you. I am having a weight prob too. When i was dx i was eight and a half stone, the steroids put me up to almost 11 stone. i was told that when i stopped the steroids the weight would fall off, about eighteen months later and i’m still waiting for the weight to ‘fall off’.
Woody, what you said about doing sweet F.A. i feel like that. i get times when i can manage things and other times i sit feeling low because things need done and i just don’t have the energy, so i couldn’t have worded it any better than you. You said that you couldn’t do a paid job, well i’m the same. i’m in the process of loosing my job and a mcmillian adviser suggested volountry work, even 1 hour per week. i thought that would be ok (haven’t commited to anything) but what if that hour that i was expected, i wasn’t well, what would happen? i would rather have it that it was very flexable.
Hi Dae, i called myself vodka because thats what i drink on a night out.
NAZ, i feel it for you poor thing. i hope you have help with the kids. my two are teenagers and don’t need constant help. If you need help while you have a rest then speak to your bcn, i’m sure she’ll be able to help by maybe getting a mcmillan helper for you.
DEB BLUE, you know i feel that the whole thing has aged me too. and i’m starting to think that the doc’s and bcn’s are fed up with me. while i think that they might treat the cancer they never cure the person. like the rest of you i have been left with problems like pain etc. but one thing i don’t discuss with the doc’s or bcn is the fact that i rarely smile or laugh now. i don’t know why.is it all the drugs that i have had pumped into me or is it still the shock of the dx?
Anyway honey you go on all you want, rant,rave and moan, we’re all here to listen.
I think this is a great place for people to put down their comments and you do feel much less alone knowing your not the only person experiencing these feelings, whether its pain, weight or just going round the bend!!
Well I saw my GP today as a follow up to my hypothyroidism diagnosis last month so I mentioned about my back ache and my arm/shoulder ache, weight, tiredness etc. etc. She was sympathetic, thank goodness and listened without rushing me despite a full surgery. Anyway, end result is off to Xray next week for the back problem, back to physio (I spent all of last year going to physio for my arm/shoulder movement) for further treatment, and she said try not to get too downhearted about the weight or tiredness, which is probably down to the problems with my thyroid but can also be an end result after chemo. (Why on TV do people always lose weight having chemo, it just isn’t true in all cases is it girls?)
The sun has been shining so I have felt a little better this week, but still full of the aches. I didn’t even mention about my knee pain!!! I think I took up quite enough of her time.
Hi Peacock glad to hear your feeling a little bit better today the sunshine can help. I totally understand when you said you didnt even mention your knee pain as Im exactly the same I dont want to be going on and on with one complaint after another!!
On the subject of weight even one of the girls in work has just said to me that she did think when I was diagnosed with BC that I would lose loads of weight (I wish!!!) as that is the impression everyone is under and Im glad i am not just the exception to the rule.
Hi Ladies, I hope you dont mind me joining in this thread. I have been lurking on the site for ages.I did post at the start of my diagnosis, but I stopped posting because I didn’t know what to say. No I am not a shy person who cant talk to other people, I make friends with people that I phone to pay a bill off lol. But this thread just got my attention and I thought someone was talking about me.
I 'll give you my background, I was diagnosed in January 2009. I had an mx a year ago next Thursday, I didn’t have rads but I had chemo, I am now on Herceptin and Arimadex and I hurt so much. I had to retire from work 2years before my diagnosis because I had Fibromyalgia and arthritus in my back, knee’s hip’s and my arms. So I was used to this pain and I am quite a lot of medication for it. I also have gallstones, and after a visit to the optians I was sent to the hospital,and they found I had a ulcer behind one of my eyes, cant remember which one. Anyway I have just read my post back and I am a wreck lol please help !!!
I have put on loads of weight round my middle, talk about muffin top I have the full muffin. I am so tired most of the time and I thought by now this would be gone. So when I saw this thread I had to join in, I hope you dont mind.
What scares me so much is are these just my normal pain or like you said Peacock, brain is working over time and I think there is something else. The pain is much worse than it was, I am up about 3am because I cant sleep no longer. I am on a really high dose of amytriptolin (excuse spelling, hubbys just come in and seen me posting and asked if there was a spell check lol) I have a morphin patch on every week, but when I get out of bed in a morning, or get up to move when Ive sat for a long time, I am like a 90 year old woman, and I am not quite that old yet.
I also thought like you, that people did that because I had cancer I would loose weight, nope not me Ive just piled it on.
Well ladies thankyou for letting me join in your thread, and I am so glad I am not the only going through this.
Heather xxx
Hi Guys
How are you all today?
Vodka, how are you feeling?
I have to say, i am exhausted! I don’t know how long this is going to last, but i am struggling big time with the tiredness and the aches. I am not sure what to do as we live so far from family, the nursery is the only saving grace and we have to pay for each extra session, although that is fine as i was given a grant a few months ago, and that was how i was going to spend it.
Just hope and pray that i pick up after the last TAX…
Hi all, so many of us with similar problem, helps us realise that we’re NOT imagining it! I do feel for you Naz with young children, how do you manage, good luck to you, mind you, I have my 3 grandchildren most mornings before school, they arrive at 7.30 and I give them breakfast and take them to school, then I go to work for a few hours! Day off today, don’t work Fridays so have been shopping, bought a “baker hat” to wear instaed of beanies as they’re getting too hot but my hair is only about 1/4 inch so I’m not ready to go without yet. Wig gets too hot as well. I saw my GP yesterday, told him about all my aches and pains, another prescription for Naproxen, he also offered me amytriptolin (I used your spelling Heather)which he said is a muscle relaxant so should relieve the night pains but I see that it’s also used as an anti depressant, Heather do you find it makes you woozy headed or anything? I don’t want to not be able to drive.
I went for a swim this afternoon, also steam and sauna, the pains just all disappeared but I expect they’ll be back! I do recommend swimming though, and heat is supposed to be good for the joints. I have also used Boots knee heat pads, they last for 8 hours.
It’s absolutely pouring here in Plymouth, shame as me and OH are going away for the weekend to a nice hotel in Cornwall to celebrate our 38th wedding anniversary tomorrow. Oh well, it’ll be nice to get away and have a break.
I hope you all have a good and relatively pain free weekend.
Hi Everyone, Naz I also feel for you looking after young children, I have young grandchildren and I adore them, but sometimes I am so tired I just cant enjoy them.
Dae, my doctor started me on a small dose of Amytriptolin, I started off at 25mg and built up to 75mg but there just not doing anything now. I started taking them before I was diagnosed with BC and the sleeping at night because of the pain has been worse. I wake up like a crooked old woman, I only want one of those curly whirly stick things lol but I can say the Amytriptolin has never made me feel woozy.
Dae I really hope you have a lovely weekend, it will be good for you. How nice it will be to breathe in that lovely sea air. I hope you come back feeling rested
Well has I said I have not been sleeping to good, anyway this afternoon I was reading some of the latest posts and I fell asleep sitting up and my head fell and hit the keyboard lol that soon woke me up. Have any of you fell asleep at the wrong time? does the exhaustion just come on you so you have to sleep? I fell asleep while I was talking on the phone to my daughter. She was just talking to me and I was gone, my husband thought she had gone off the phone and I had dropped off to sleep, but no she was still talking lol. Anyway I woke up suddenly and started talking again and my hubby couldn’t beleive it. I did tell her though, so now if she is talking and I go quiet she checks I am still awake lol
Anyway ladies I will try and keep awake now and read some more posts
Heather welcome and feel free to join in with us “moaners” LOL, maybe we should rename it the moaning thread.
Sorry to hear you’ve had to take early retirement, maybe something/someone is telling you that it’s time to take things easier and try to enjoy life a bit? The exhaustion used to just come on suddenly and I just had to sleep. Now it’s just a general fatigue, do you mind me asking how they diagnosed you with fibromyalgia? I’ve often wondered if I suffer from that as I remember 2 years ago before my BC diagnosis I had pains then too, I put it down to reaching menopausal age.
Oh Naz, I take my hat off to you for coping with a young child. My OH works away for 2 weeks, then he’s home for 2 weeks but when I was dx he wanted to take unpaid compassionate leave to see me through it and thank goodness he did, he was/is my rock. Life is more normal now he has been back to work for a year but I still hate the 2 weeks he is away.
Dae, Amitryptalene is often used as a muscle relaxant (my sister has been on it for years for back pain), it’s usually only a 10mg dose I think. It’s also used as a nerve pain pill, I was given it once for shingles, as well as an AD. It doesn’t agree with me, it makes me soooooo grumpy I want to rip people’s heads off! Happy Anniversary and hope you have a good weekend.
Vodka, and everyone else hope you’ve all had a better day.
Hello all,welcome to Heather,as Peacock said,moaners anonymous.
I too am interested in what the symptoms of Fibromyalgia are,Im wondering if thats what the pain down my good arm is,I have to laugh at myself at times,I was a hairdresser all my life so thats why I say I couldnt go back to work(imagine blowaving for 8 hours with an arm thats had node clearance). Women who moan as much me were the ones who I avoided like the plague,but having said that,I had quite a few clients whod had MXs,dont remember any saying they had as much pain as I currently experience. Have the best weekend you all can,Im a teetotaller from choice(got sooooo p ***** when I was 16)so I`ll start calling myself Ribena.
Love from Mags x
Hi all
Don’t take it the wrong way when I say I’m so glad I’m not the only one in pain. Had lumpectomy & full node removal last July, then 6 chemo (3 Fec/3 Tax). Was recovering well from op, but as soon as I had the chemo I was so sore & tight it was as if it had just been done. That eventually improved, but the same thing happened after every treatment, Each time it improved, until the last Tax, which was 18th Dec, since then I am stuck with the pain. Had 25 rads which I don’t think affected it one way or the other. Sometimes it is like burning in my armpit, sometimes it feels like a tight strap round my upper arm.Sometimes it can be a stabbing pain in my breast. When I lift the arm when I’m naked, I can see the skin of my inner arm sticking to the skin on my chest. In bed it hurts to change position, even when I don’t completely wake, I’m aware of it & hear myself groaning. (Goodness knows what my upstairs neighbours think if they hear me-I live alone). I’m doing all the stretching exercises several times a day, & started a swim therapy class this week. My other arm is tender also as the chemo has burnt my veins.Since the last Tax also I have peripheral neuropathy, my fingers are doubly uncomfortable because all my nails have fallen off. My feet are so numb it hurts (how stupid does that sound, but it’s true), & I also have the numbness in both lower legs. I was given to understand that this would go back to normal, but now onc has told me it doesn’t always.I worry that this is how I will always feel now, never completely comfortable ever again.
hi Everyone, Well another night Ive been up since 3am ((((yawn)))) I am sat well back from keyboard, dont want zxcvbnm across my forehead again lol
Peacock and Woody it is really hard to get health professionals to understand the pain you get with Fibro. I had been suffering for about 2 years with a pain that I can only descibed that travelled round my body. One day I couldn’t walk, then a couple of days later I couldn’t move my arm it just went round in a circle. Then my GP sent me to see a rheumotologist and she diagnosed it straight away. You have 18 trigger points in your body and if you get pain in more than 11 of them thats the diagnosis. It is really difficult for me at the minute, because the symptoms of fibro are very much like the side effects with chemo, check this site out fibromyalgia-associationuk.org sorry cant to the link thingy lol I know I get stressed when I go to the doctors sometimes because I just get “it’s your fibro causing it” but fibro does make you very tired and when you get a bad flare it is just like getting the flu. So thats fibro I really hope you haven’t got it, because alongside BC it gets really confusing.
Peacock you can spell Amitryptalene lol I was given it so I could get some sleep when the pain was bad.
Woody I use to be a hairdresser many moons ago, I packed it up when I had my children and never went back to it. I had quite a few different jobs when I went back to work, but my last job was cooking, and because of the fibro I kept dropping things.
Divvy I wish I could swim, it must be fantastic being in the water, does the pain go when your swimming? (wow I am sleep deprived I just had 3 goes at spelling water)lol Divvy you said youd lost your nails, did that happen straight away?. I am having problems with my toe nails they look like there coming off, but I finished chemo in October 2010. I thought they would have come of before if it was any thing to do with the chemo.
Well Morning Moaners I am going to have a coffee and try and stay awake for a few hours.
Bye,
Love Heather,
xxxxxxxxxx
The fingernails didn’t come off straight away, they started to come off about 3-4 wks after the last chemo. Before that they grew very long & turned white. The big toenails did the same & came off just before the fingernails. The other toenails have taken longer. I actually woke up yesterday with a toenail digging into my thigh - sadly it was my own.
Re the swimming, I was never very good at it, & haven’t done it for years. The only thing I managed to learn was breast stroke, so given where my pain is, I’m hoping it will help. Also I thought being swim therapy, no-one would expect too much, & being a bit folically (sp?) challenged wouldn’t be so much of an issue, & in this I seem to be right.
