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Herceptin = 'Flippin awful, anyone else?

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Re: Herceptin = 'Flippin awful, anyone else?

Hi im in your club on 15/18 and feel just terrible from the pains in my bones. They burn so deeply. Get so tired of feeling ill that it makes me feel really ungrateful as im sure it will do me good long term but would just feel so liberated to say stop now. Also effected my teeth by attacking the nerves and basically rotting them so the toothache doesnt help either. Feel as if im falling apart, and like many here the herceptin was talked about as if it would be nothing so kept on thinking i was imaging all of it. To everyone your so brave and i just hope our combined experience will help improve treatment for future generations. Godbless xx

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Re: Herceptin = 'Flippin awful, anyone else?

Herceptin is a brilliant drug but the side effects are awful. Im on 14/18 injection and cant move without pain or pick up a mug of tea. Just have to keep thinking about the good its doing. All my love and hope things are improving for you now. X

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Re: Herceptin = 'Flippin awful, anyone else?

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

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Re: Herceptin = 'Flippin awful, anyone else?

Thank you, Chrissie10, that's reassuring, and the bone pain is exactly as you describe. I can't take anti-inflammatories which is not ideal as I think they would help. 

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Crochetgirl, I didn't have Tamoxifen, just Herceptin. Still feeling stiff and sore in knees, legs. Forgot to add my hands also sore, I think an anti-inflammatory is helping a bit. My niece had HER+ BC just over 5 years ago whilst still in her late 30's, she also had Herceptin and was not surprised when I told her about the joint pain. However she is currently skiing in Canada and regularly runs 7 to 10 miles a few times per week. She said it will eventually wear off. Hope you are feeling better.




Y
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Re: Herceptin = 'Flippin awful, anyone else?

Hi Chrissie10, I think the other thing is that in terms of cancer treatment in the UK, Herceptin is relatively new so there aren't vast numbers of people to say "this is the possible  long term side effects of this drug" if you see what I mean. We are only just finding those out, plus people are finding Herceptin harder going than we were originally told they would. Do you take Tamoxifen as well? 

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Re: Herceptin = 'Flippin awful, anyone else?

Hello  Chrissie10

 

Welcome to the forums. 
Just to let you know we have a helpline should you want any support or practical information, the free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

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Re: Herceptin = 'Flippin awful, anyone else?

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.
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Re: Herceptin = 'Flippin awful, anyone else?

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!
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Re: Herceptin = 'Flippin awful, anyone else?

Hi Sharka1,

I am guessing that as you are only around your 7th Herceptin it is not long since you finished chemo.  I know it is easy to say "don't worry" but I would have thought that your pains are a combination of all the treatment you have had up to now.

I had chemo followed by Herceptin 4 years ago and I got sick and tired of all the medical staff telling me that after chemo Herception was "so easy".  I personally found it quite hard, the joint pains got progressively worse and worse through the 18 treatments. 

By that time I was also back at work full time so the going to hospital for treatment in the morning and then doing a full day at work, by the time I got home I was exhausted.

I would say, don't be hard on yourself, don't push yourself unless you feel up to it, I think that a lot of people assume that once chemo is done then treatment is done.

I didn't take Tamoxifen whilst I was on Herceptin, I couldn't tolerate that as well and basically told my onc to "bog off".  I started taking it when Herceptin was finished, but even then only stuck it for a year before I ditched it due to side effects, but that is another story entirely.

You will get there in the end, but I think that joint pain is played down an awful lot when it comes to treatment.

Take care

S

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Re: Herceptin = 'Flippin awful, anyone else?

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 .
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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

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?
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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

Hello Sharka and welcome 🙂

I have been on herceptin for 10 years now and have never heard of a reaction like this. Has your oncologist sent you for any scans to see if there is a reason for this happening? Do tell us a bit more about your breast cancer diagnosis and if you are on any other treatments like tamoxifen as that can often cause joint pains. One of the things I hate about cancer is the way we have to question every ache and  pain we get in case it is being caused by the cancer or by the treatments, or just part of every day wear and tear!

 

Dawn

xx

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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

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.
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Re: Herceptin = 'Flippin awful, anyone else?

I'm really not sure if there is anything that can be done to help. I'm hoping it will go eventually. I'll keep you updated after seeing my GP. How are you feeling now Crochetgirl?
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Re: Herceptin = 'Flippin awful, anyone else?

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?
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Re: Herceptin = 'Flippin awful, anyone else?

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.
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Re: Herceptin = 'Flippin awful, anyone else?

Thank you for the update re your oncologist visit. Yes it is a nuisance having the loading dose in hospital for 6 hours but I try to view it positively and enjoy the rest.
I'm looking forward to seeing my oncologist on Wednesday.
I work as a Day centre officer with older adults. Your life must be busy with young children too.
I ran 13.1 miles today. I'm pushing myself as I have a place in the Berlin marathon at the end of September. Really not sure I'm going to manage it the way my legs are at the minute. Still I will give it a go.
Once the marathon is over I will just run shorter distances. I had such a good running year last year so it's been difficult to suddenly deteriorate so drastically!
I'm so looking forward to the holiday.
Good luck with your treatment tomorrow. Do you have it in hospital or at home?
J x
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Re: Herceptin = 'Flippin awful, anyone else?

Hi Littlemissacti. You are most welcome, I wasn't sure if that is appropriate on here, but I really felt for you. 

Wow, that is busy! The cruise sounds amazing. What do you do for work? 

So, my appointment yesterday was good. My Oncologist is going to switch me back to IV herceptin after my next sub cut one which is on Tuesday.  He was very interested to hear that there are a number of people who think IV herceptin  carries less side effects. I will  need the loading dose again which is  a bit of a nuisance but worth it to see if I feel better on it. He also thinks I will end up on Tamoxifen for life, there are currently trials that he thinks will indicate that is the best treatment. I have a long term spinal problem which is more painful at the moment, so I need an MRI to rule out anything suspicious. I'm not worried by that, it doesn't feel like there is anything new. N x x 

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Re: Herceptin = 'Flippin awful, anyone else?

Thanks so much for the virtual hug. Life is rather hectic at the minute, I'm having my bathroom renovated, I'm going on a Norwegian cruise next weekend and I've got a job interview next Friday! I'm quite likely to be made redundant in the next 6 months so I've started job hunting.
How did your appt go today? I see my oncologist next Wednesday and I'm looking forward to discussing the subcutaneous Herceptin.
Xx
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Re: Herceptin = 'Flippin awful, anyone else?

Good for you, I take my hat off to you for not letting the fatigue beat you. If you enjoy the challenge, and the satisfaction after you have completed a run, I think it's probably worth it. I don't know if a virtual hug is appropriate here but my heart goes out to you re the crying. It's bloody awful, this cancer business. X 

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Re: Herceptin = 'Flippin awful, anyone else?

Hi again, I think I'm regaining some stamina. I can now run 10 miles but it is agony during the last couple of miles and wipes me out for the rest of the day. Still undecided if it's worth it but I'm determined not to let it get the better of me, but it is hard. I've cried more during the past couple of months than I have for 3 years. Like you say you just want life to return to normal. I'll be interested to hear what your oncologist has to say. x
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Re: Herceptin = 'Flippin awful, anyone else?

Aw, my girls have definitely been my drive to get through this. But yes, I'm bored now, I want normal! 

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Re: Herceptin = 'Flippin awful, anyone else?

Thank you for that, it really does help to know other people are going through it too. I think that is fascinating about the iv versus subcutaneous. I am seeing my Oncologist on Thurs, I am definitely going ask him about that. How are you feeling now you are having a break? x 

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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

Do you know  what, Mummycrow, that was me in May exactly! My tummy was gigantic, I had the loose bowels/ constipation / wind thing, one boob and had put on a ton of weight too. Gorgeous! I promise you, it will all settle down. You could ask for some water retention tablets to get rid of the excess fluid Dosetaxol has given you and that will help. My weight is shifting slowly as my energy levels come back in. Do you have children demanding your attention too? 

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Re: Herceptin = 'Flippin awful, anyone else?

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!!
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Re: Herceptin = 'Flippin awful, anyone else?

Dosetaxol is awful for joint pain too, I remember lying on my bed in pain, not moving, dosed up to the max, and still being in horrendous pain! I thought I would be shot of it when I stopped the Dosetaxol, I didn't realise the Heceptin does it too. Well done on getting through the chemo, my Oncologist reckons FEC-T is the toughest chemo around, I'm guessing that's what you had too? 

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Re: Herceptin = 'Flippin awful, anyone else?

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
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Re: Herceptin = 'Flippin awful, anyone else?

 

Hi again Smiley Happy I have everything crossed for you that it all stays stable. I suppose the amazing thing about all these meds is how long you can live with the secondaries now compared to 10-15 years ago. How do you have your current treatment? The Marsden is renowned for being at the front of oncological advances. Yes, that is very sneaky, I hope those soft tumours you  mention do not progress. I remember telling patients not to trawl the net years ago.... Even now it's slightly dodgy if you don't look at the right sort of website. By the time patients got to Radiotherapy most of the bc patients had been through alot already and knew a great deal. I remember when herceptin was first licensed, not all patients got it and it was a real postcode lottery. Thankfully now it's a standard. 

I found my lump in November last year, I am very "breast aware" because of my job and it quite literally popped up over night. Very unusual for one to do that, but not impossible apparently. It was big, 37 mm and my Oncologist who I had known for years, felt a mastectomy was the safest way to go. He said I could try chemo first, but I felt I just wanted it gone and he agreed surgery was the fastest way to treat it. Luckily I was node negative, but ER  positive. I then started FEC-T just before the end of the year, and had Herceptin with my 4 th chemo/ 1st Dosetaxol in March. I will finish the Heceptin in Feb next year. I have two young children and I can definitely say it has been horrendous. I do not know how anyone gets through it! I don't needs rads as I was node negative, I would not have fancied being treated where I worked! 

 

How are you day to day, Dawn, do you struggle with pain or is it well controlled? X x 

 

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Re: Herceptin = 'Flippin awful, anyone else?

Hi again 🙂 Firstly your question about zometa. This is one of the bisphosphonate drugs used for patients who have spread to their bones (not just bc). Its other name is zoledronic acid which you might be more familiar with. When I started out with bone mets I was put on bisphos. .Firstly I was given was pamidronate. At some point in the 12 years with bone mets I was then changed to ibandronic acid (oral med) but I didn't get on with that so switched back to pamidronate. Further down the line when pain was becoming more of an issue they switched me to zoledronic acid and I have stayed on that. The latest new drug for bone mets is denosumab which is a subcut.form and lot more convenient all round for patient & hospitals. I am treated at the Royal Marsden and I don't think they are generally offering this to patients as yet although they have been switching patients who are willing - to the subcut. herceptin. I have chosen not to go that route. So far as stability goes I started out my secondary journey with extensive bone mets and once I was on treatment for that there was a lot of improvement to many areas and now skull, ribs & collarbone don't show up on most scans. My pelvis & spine though are deteriorating, particularly as most of my spine is affected. It's a sneaky disease and although scans show stability bit by tiny bit it is eating into my spine, with a number of soft tumours wrapping around nerve roots :(and I have just about had my lot with rads so keeping everything crossed that herceptin keeps on working for me. Oops I am getting carried away. You are right when you say a lot of bc patients are 'expert patients'. I know some still prefer not to know too much but I have always been interested. I remember in the early days of my diagnosis back in the 90s there was so little information available, but with the appearance of www we had the resources literally at our fingertips if we wanted information. But if you mentioned google to the nursing staff back then, you got the disapproving look and warning not to go searching for information as a lot of it is bad!!! How things have changed eh. What about yourself - how did you discover your bc and have you had surgery & rads? and how far are you into your year of herceptin? Lovely chatting to your crochetgirl.

 

Dawn

xx

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Dawnhc, don't worry, your post makes perfect sense - I worked in  Oncology for 17 years as a radiotherapy radiographer then as a manager before all this so all the terminology is very familiar to me. I think my knowledge has made me question everything a great deal as I go through this "journey". 

That's very interesting, and wow, what an effect the Heceptin has had for you! How long have things been stable for? And I haven't come across Zometa before, is that a breast cancer specific med? 

I think alot of breast cancer patients are "expert patients" about their disease and treatment and I really noticed that in the last few years I was working. I think it's why the forums make very interesting reading, everyone is so knowledgeable and involved in their treatment. 

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Re: Herceptin = 'Flippin awful, anyone else?

hi again crochetgirl. I have been on herceptin for 10 years because I have 2ndaries. When I was first diagnosed in 1990 (with primary bc) her2/herceptin wasn't around. I had several new primaries/recurrences over the years before my 2ndary diagnosis, and as we know now her2 positive is a particularly aggressive form of bc so even though testing wasn't then around for her2, it is thought that my tumours probably would have all been that type. When I was diagnosed with secondaries in my bones I had a lot of lymph node swellings around my neck and jawline which chemos had failed to  control. My onc decided to check if her2 tests had been done on tissue samples from my last mastectomy. and discovered they had indeed and I was her2 positive. I was put on herceptin and in less than 2 weeks all the swollen lymph nodes had gone down never to reappear 🙂 and I have remained on herceptin since as it is controlling my disease, along with the bone drug - zometa. Sorry that is a bit of a lengthy explanation and I realise you are new to 'forum speak' so if I have confused you do ask any questions if it would be helpful.

 

Dawn

xx

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Dawnhc, thank you for replying to my thread. May I ask why you have been on Herceptin for so long? It is hard to work out what gives you which side effects! That is interesting about the injection possibly being harder side effects wise than the iv version. I will ask my Oncologist about it when I see him next. I am not sure about stopping the Tamoxifen as I am concerned that it would allow the disease to return? 

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Re: Herceptin = 'Flippin awful, anyone else?

Thanks for replying JaneyW. I am also very grateful for the Heceptin, but it's nice to know I'm not alone with having some side effects. Well done on getting to the end if it! Smiley Happy

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Re: Herceptin = 'Flippin awful, anyone else?

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.

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Re: Herceptin = 'Flippin awful, anyone else?

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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Re: Herceptin = 'Flippin awful, anyone else?

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

Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator 

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Herceptin = 'Flippin awful, anyone else?

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.....