Hello to you all, this is the first time I’ve posted! I am on Herceptin for a year, I have had FEC-T, and I am finding the Heceptin really grueling. It is nowwhere like the chemo but not the easy ride the health professionals say. Any one else? Straight after my sub-cutaneous dose I have localised soreness but also generally feel unwell for a few days. My joint pain is constant in those three weeks and seems to worsen each cycle. I am also on Tamoxifen which is giving me delightful hot flushes. Anyway, Moan, Moan, Moan…
Hi Crochetgirl
Welcome to the BCC forums, sorry to read you’re having such a tough time at the moment. Whilst you wait for the other users to reply if you would like to talk things through do give the BCC helpline a call on 0808 800 6000. Here you can share your thoughts and cocnerns with someone who will offer you a listening ear as well as emotional support and practical information. Lines are open Monday to Friday 9 to 5pm and
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Best wishes Sam, BCC Facilitator
Yeah, it always makes me shake my head when the oncologists say ‘oh well, there aren’t really any side effects on Herceptin’. Try taking it?? OK, after chemo it may have less effects, but it is not without. You have only to search on Herceptin and side effects to see that others too have problems. But some lucky ladies don’t, and I am genuinely pleased for them.
HOWEVER, the upside longer term of being on Herceptin allows me, for one, to accept the issues and be grateful it exists. And even more so that it can now be injected into the leg. And I had my last one last week, which is why I may be sounding a bit like Pollyanna, sorry!
Jane x
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Hi crochetgirl and welcome to the forum :). I was drawn to your thread because of the title but I notice you say you are also on tamoxifen. I have heard so many on tami who have suffered severe joint pain, I know it is difficult when you are on a cocktail of drugs to know what is causing what, or is it the combination that causes the problems. I have also recently heard a few saying the injection form of herceptin has given them a few more problems than the iv herceptin. Maybe you could ask your onc if you can experiment and stop the tamoxifen for a short time to see if the joint pain improves. I have been on herceptin now for more than 10 years and have been fortunate never to have had any side effects apart from a nose that drips occasionally.
Hi, I’ve had 3 lots of Herceptin now n last one was on Friday, well I can hardly move with joint pain!! Also on Fri was my last Docetaxel chemo, start Tomoxafin in 3 weeks. Feel flipping awful n tired! Angie x
Hi, yer had Fec also, I’ve spent this whole week more or less in bed as in pain n also upset tum n bloating! Thought it would be over now but didn’t realise Herseptin has this effect, great! I’ve put in 2 stone n look like a duck as got no boobs anymore so tum sticks out more than anything else, happy days!!
Hello crochetgirl, sorry to hear you are suffering. As others have mentioned it could be the Tamoxifen but I wanted to share my experience. I’d been on IV Herceptin for nearly 3 years ( maintenance as I’ve had BC twice, 2005,2011) but at the end of April I was swapped to Subcutaneous and I’ve been fatigued and my legs are heavy and ache! I ran the London marathon in April without too many problems, I’ve since struggled to run 4 miles at times. I decided to have a break with a view to going back on IV if my oncologist agrees at the end of Aug. I’ve also heard from a nurse that many new patients on the subcutaneous are feeling exhausted.
Not sure if that helps but sometimes it’s good to know you are not alone and what you are experiencing is real.
Do hope things improve for you x
Hi, yer I’ve got two daughters, 16,14, both great kids who have helped me so much and older one has been like a little nurse to me.
So fed up with it all now n just want life back n normal body!! X
Only found out today, well it appears my CPK blood levels are raised which can cause muscle aches and fatigue. Need to visit my GP now to discuss further and what happens next. Had a CT scan last week and Echo heart scan next Thursday. As daft as it sounds I’m pleased to have a reason why.
No, it’s not daft, I think it’s better to know what the cause is of something, not all this wishy-washy “it might be a side effect”. Do let me know how you get on with the GP - can they do anything for it?
I hope so too, Littlemissacti. I’m ok, had to have a MRI scan yesterday to check my back pain is nothing sinister, I hurt it years ago and it constantly bothers me but the physio won’t treat it untill secondaries have been ruled out. I am just getting used to the fact that whenever you have a medical ailment, everyone wants to rule out cancer first. Other than that I’m ok, just hot and tired (Tamoxifen, I thank you!) I have herceptin on Tuesday with iv infusion so I will be interested to see if I feel any less side effects with it.
Hi
I am new to the forum but would love to hear from anyone who is experiencing their legs giving way and being unable to stand after having Herseptin? This has happened to me on both my sixth and seventh treatment which I had yesterday. Very upsetting as no one seems to know why this keeps happening. I am ok after a nights rests but legs not great. Also have bad joint pain when sometimes it is difficult to walk. It has been suggested that that is a side effect from chemo which I finished at the end of June.
Would love any comments Sharka1
Hi I was diagnosed with breast cancer last Christmas I had a lump which was removed along with some limphnodes. I was told that it had been caught early but was the most aggressive type. I have not started to take my tomoxiphen yet mainly because of the problems I have been experiencing, and now have been told I must.
The problem with my legs seems to be getting worse but they seem to be unsure as to why this is happening. Could be a side affect of the chemo still! I have resently had a bone scan and that was fine and each time they have done obs which they were happy with. My heart has been affected by the Herseptine but this has not hot any worse. I am due to see the heart team soon for a more in depth look.
I cannot pretend not to be concerned by this as even the nurses have never seen anything like it before!!??
A little worried Sharka1
Hi Sharka1. I have found Herceptin very tough going but I haven’t had the problems you have had with your legs giving way. I have lots of joint pain, particularly my knees, feet and Hips. I swapped back to IV herceptin from the subcutaneous delivery method and have found it has less side effects, how do you have it? I think you need to keep on at your Oncology team to investigate your issues. I have been surprised by how long the chemotherapy side effects last after you finish with it - did you have FEC-T?
Hi
I have mine through a pik line in my arm, and yes I did have FEC-T. I am seeing a temporary oncologist at present as my usual one is off on leave for six months, but last time I saw him he said he was not going to take me off it and I would just have to get on with it. Today my legs have gone again and seem worse than last time. Any way it’s interesting to hear that you also experienced joint pains.
Thank you so much for your reply it’s hard sometimes feeling unwell for such a long time. I don’t say much to the children or my husband as they have had a lot to deal with this past year. I have been so proud of how they have all dealt with it, ( my son is 8 years old and my daughters 11 and 15 years old).
Thank you again Sharka1
Hi Sharka1 again 
It is a horrible business and, like you, I don’t moan about to my husband. Kids are incredible aren’t they, mine are 8 and 4 and are relatively unscathed by it. It is such a long time to be ill and I think anyone who gets through is amazing. I can understand you being worried about your legs, but it all does so many wierd things to us, don’t stop telling them, even if it’s just when you have it through your pic. X .
You are both right. I guess loosing control of my legs has just made me uneasy there’s something in the back of my mind that thinks this could become permanent and that is what scares me. I callapsed in work today so embarrassing I wanted the ground to swill ow me up! The aches and pains I can live with it’s not knowing if any minute I am going to lose control. Any way enough my moaning!
I finished my 12 month course of Herceptin (jab) last September. Legs still painful, usually stiff but better when I am moving round. Somewhat relieved to read others experiencing same problem and it’s nothing more sinister than a side effect. I hope it goes eventually, but if not I figure it’s a small price to pay in return of keeping a recurrence at bay.
Hi, I was diagnosed with Herr 2breast cancer in 2013I had an operation then chemo ,radiotherapy and herceptin whilst taking the perception my legs suddenly became very heavy like lead and extremely painful! I have had numerous amounts of different medication and j still feel awful it has effected my life ! Is there any help out there please tracey x
Hello again, Aine! I thought I might as well chip in on this thread as well, to say that after 5/18 Herceptins I have not yet had any aches and pains, just the skin problems I mentioned on the September 2016 Starters thread (see also Facial Rash on Herceptin thread). I hope your pains get better now you have started exercising again, and that we don’t both become regulars on this thread!