Hi I am new to this and wondered if achey, stiff and sore legs are a common side effect of herceptin? I have only had 3 doses so far.
Hi cheeko,
Welcome to the BCC discussion forums where I am sure your fellow forum users will be along shortly to offer their support.
I have put for you below the link to BCC’s publication for Herceptin. I hope you find it helpful.
www2.breastcancercare.org.uk/publications/treatment-side-effects/trastuzumab-herceptin-bcc41
Take care,
Jo, Facilitator
HI Cheeko,
i am having the same problem and have infact contacted the hospital today to ask about the stiffness. I can not get up easiliy from sitting down and even find it difficult turning over in bed. Very sore. I am alright if I keep moving but staying still for too long - even standing, makes me feel very stiff. It has gradually got worse and I had a bit of a weep this morning as it is now becoming painful.
I have just had cycle 7 of herceptin but the stiffness has gradually got worse since Cycle 5. I wondered whether it was lack of Oestrogen as also recovering from chemo. Not great. I am hoping to be in Clinic this week so will let you know.
Hi Lil41 and Cheeko,
I finished 12 months of Herceptin in February last year. The aches, pains and stiffness are very much Herceptin related. The more you have the more cumulative the effect is. By the end my legs felt like there were trying to walk in treacle.
Sorry not to be the bearer of better news. I was recommend to take painkillers if it got that bad.
Sam
Thank you Lily41 and SamLee for your comments. I seem to find the herceptin harder to deal with than the chemo, I felt not bad during chemo, just tiredness really.
But since my first cycle of herceptin in November everything has changed. I am exhausted all the time and not fit to do anything really, and to top it all off I am walking about like an old lady, I’m 33! I feel the pain and stiffness in my legs have slowly gotten worse by each cycle and I still have 15 to go, what a thought! I haven’t seen my nurse yet about it, is it probably just stronger painkillers they would prescribe?
I still have 19 sessions of radiotherapy to start at the end of this month, I really hope my energy levels creep up a bit by then. I had planned to go back to work as a nursery nurse in April as I wasn’t expecting any problems with the herceptin, but I really can’t see that happening if things don’t improve, I just don’t feel fit to cope with it at the moment. My partner is great and keeps telling me I shouldn’t even be thinking about work at the moment but I can’t help it. The thought of feeling like this until I finish the herceptin (November) is frustrating. And at the moment I can’t see myself being able to go back to work until treatment is finished.
What is everyone else’s experiences and thoughts of when they went back to work? And if anyone did go back to work during treatment, how did you find it physically?
Ps this is a great site and I’m glad I came across it, I don’t find it easy discussing my worries with friends and family very easily.
I was lucky (if you could call it that) when I was dx as I had just left my job. Long story short I was living in Dublin with hubby who was there for work and we just about to come back to London when I found the lump so I just came straight back and started treatment. I had chemo first to shrink which knocked me out nearly as I had it every 2 weeks instead of 3 so never got a good week to recover. I then had surgery (WLE and SNB) and then radiotherapy. I started Herceptin during chemo so had it all through surgery and rads.
I found a job and went back to work full time in the City in August 2011 about a month after radio which I was about half was through Herceptin. It was quite hard as I was constantly tired, especially by the end of each week but just made myself do it as I wanted to get back to work. I have an hour train commute each way so found myself napping on the train in and home from work. On my Herceptin days I would get the train in, hot foot it across to Harley St for 9am, have the treatment over half an hour and then hot foot it back to work and be in work for about 10.30 and then just work through the day.
I waited until I felt able to cope with working full time because as I was starting a new job I couldn’t have a phased return to work or any such.
Don’t feel under pressure to go back to work, especially if you don’t have to. I found my energy levels used to come and go so don’t beat yourself up about it. If you are returning to an existing job you should be able to do a phased return. Something to look into.
Sam
I’ve had 15/18 Herceptin, and the only se I have is a runny nose. That’s it!
Are you having Herceptin alongside chemo? I ask because I had my first 3 Herceptin at the same time as Tax, and some girls had achy stiff limbs then, but that was from the Tax and not the Herceptin.
Hi Samos, I had my first two cycles along with chemo and my 3rd last week on it’s own. The stiffness seems to be getting gradually worse every day, I’m just hoping it may ease off soon before my next cycle. I’m going to have to see my nurse about it.
I don’t like to moan as I know I’m very lucky to get this drug, some women in other areas are not so lucky. I just wasn’t expecting to have these problems with herceptin when I mostly sailed through the chemo part but I realise everyone is different. Good luck on your last 3 treatments, you’re almost there.
SamLee - I think you’ve done really well returning to work, I hope the tiredness has improved. Here’s hoping I can do the same when I feel up to it, whenever that may be! I still have a lot more treatment to go so maybe I should concentrate only on that and on becoming fit and well again before making any decisions about work. I’m under no pressure from anyone but myself so I’m lucky really.
Thanks for your comments.
Hi there,
I’ve just had my third herceptin treatment and like you Cheeko I feel like an old woman. I’m a fair bit older than you at 54 but I do feel old before my time. I thought herceptin was going to be a breeze and that I’d go back to work once I got used to it but I’m so tired when I wake up it takes about 2 hours to get going. It’s a bit depressing that people are saying it gets worse as my last dose is due the end of November.
I finished my chemo in July and my radiotherapy in August. I had no problem with the radiotherapy but of course I wasn’t on herceptin then, only tamoxifen. Hope it all goes well.
Hi
I have only had one cycle so far, but I also suffer from stiff joints. In the mornings my hips really ache and I so dont want to get up but I just take some pain killers and force myself as I have to do the School run. I am also on tamoxifen which I think causes some bone aches and completed 8 chemos Fec-T (last one Sept) and 25 rads. I applaud you SamLee for returning to work so soon, I am going back shortly and I am dreading it even though I love my job. Like some of you say you feel like an old lady especially after sitting a while.
xx
Any advice anyone?
I am now nearly 2weeks past my 3rd herceptin cycle and still suffering with aches and pains in my legs. It is getting worse at night when my legs (and arms) become restless and waken me up, I’ve just managed a few hours sleep in the last 5 days. Last night had to be the worst.
I’m getting really frustrated with this and felt like giving up on treatment last night (very bad night) and I can’t imagine having to deal with this for the next 10 months until I am finished the herceptin.
I started with this while on chemo and it got worse when I started on Herceptin, my Onc was not very sympathetic to my pain at all I was unable to cope with the simplest of tasks like dressing walking getting up off the bed without horrendous pain, my Gp was fantastic and said I had Chemo induced nerve pain, (CINP) she put me on Gaberpentin twice a day and it has defiantly helped, I don’t think I have slept a good nights sleep in months as the pain still wakes me up In the night, I am also on Letrozole and this also has side effect of bone pain!! I do manage to work, at the moment the pain is at its worst at night, so when I come home I don’t sit down I do what I have to, because if I sit I find it hard or to painfull to get up do anything then I just sleep most of the evening.
I have tried talking to my onc but he just says well we can stop your treatment!! But that’s not the answer in my case,so I just get on with it, I am half way through my Herceptain another 9 to go .
Thanks for your comment Chico. Has the pain gotten any better the more cycles you have, or worse? I am now 2 weeks past cycle 3 and feel a bit less in pain today so i’m hoping to have a better week this week before cycle 4. Maybe I’m just going to have to put up with this every cycle.
I was hoping to get back to work in April (still have radiotherapy to start) but I can’t see that happening if this is going to continue after every cycle.
Hi Cheeko
I am not in as much pain as I was, but I have put that down to the Gaberpentin that I take, at first I would have to take the day off after treatment as I was so stiff and sore, the ninth and ten treatment I just did a later start time for work I am still very tired and rest up when I get the chance, I also take paracetamol 4 times a day or cocodalmol or diclofenac as a needed depending on my pain, the night time is the worst it’s still painfull to turn over also my arms and hands go numb if feels like I have boxing gloves on, so if I wake up I am unable to hold a glass of water as I carnt feel it. I work 30hrs a week it’s not been easy, I work in retail so lots of standing to be honest it’s when I sit down then try to get up I hobble around and find it hard to stand tall, I am just getting on with it to be honest, I was able to get a disabled badge for parking and that has been a god send as it has given me back my independence.
Thanks for your comment, I will have to see the doctor and see if he will prescribe me anything. I have just been taking paracetamol and ibuprofen but doesn’t seem to be working anymore.
Well done on getting back to work, it does sound tiring. I think work is way off for me at the moment.
Thanks again for replying, you can feel quite alone in this when you don’t know anyone else who has been through the same treatment. I will get to the doctor, hopefully I might get something to help me sleep aswell.
Well, herceptin no 4 done on Wednesday and my legs are stiffening up again! I was advised by GP just to take painkillers.
Looks like this is how it is going to be for me with this treatment. But thinking more positively now and have accepted that this is the way it is going to be for the next few months, and things could be a lot worse! Just going to see how it goes.
I think my plan to go back to work in April (as a nursery nurse) is totally out of the window if this continues!
Best wishes to all still going through treatment x
I’ve replied to you on another thread but will repeat here. I have the same stiffness and aching legs. I first of all put this down to chemo as I started Herceptin along with Taxotere but if anything it has been worse since chemo finished. I feel like I have the flu for several days after every dose, I also have the runny nose and extreme fatigue. Most ladies I have met think Herceptin is a breeze but in some ways I felt better on chemo. I did go back to work but still on a phased return and struggling some days even on minimal hours. Don’t push yourself if you don’t have to.
Hi, I had first H in January and 2nd a couple of days ago. This was postponed because of severe fatigue together with bladder, kidney and general abdo pain. Frequent weeing and the other! Onc set up scans but haven’t had the results yet. But am feeling better hence the 2nd dose which had to be a loading dose again . My main problem is fatigue which I had just got over after chemo and was feeling energy returning over Christmas. Now I have some energy in the morning but none after that even if I have an afternoon nap. I’m retired thankfully! I am feeling depressed and tearful but also snapping at hubby which he doesn’t deserve as all he does is help and support me. I feel so rotten being like this to him. When I apoplogise I just cry and I don’t know which he finds more difficult to deal with. I do feel sorry for him. I now think I just (just!) have an irritable bowel and also bladder - well just plain irratable really. I’m watching what I eat and I do seem to have a reaction to certain foods with bowel and bladder syptoms. Oh also I’ve had a skin rash which the G.P. says is an allergy but I’ve not worked out to what yet. oh joy. if only we could turn the clock back a year or so eh? Sorry to be a “moany groany granny.”
I’ve just had 3rd Herceptin-1st one without chemo. Have def got the runny nose and am tired but am geting radiotherapy so can’t attribute that to herceptin yet. Have a sore hip-never had this in my life, so maybe herceptin but could also be the tail end of taxotere. So far so good!
Is there anyone out there who is on long term Herceptin treatment? I’m coming up on 6 years and all of the side affects that have been mentioned have become “life time” issues for me. I was considered stage 4 when diagnosed and Herceptin has kept me cancenr free. I’d love to hear if there are any long term studies; when is it safe to end treatment?