Herceptin and me!

I had my seventh Herceptin infusion yesterday and I feel terrible. Everyone keeps telling me I should feel great after all it’s not as bad as chemo…then why do I feel so crap! Picked the local paper up and 3 local women have died this week with Breast Cancer…all under 45. I should feel lucky but I don’t. I have terrible rib pain, feel sick, had horrendous diarrhoea and I’m sure the cancers spread to my bones. Waiting for bone scans etc., just got that dreadful nagging feeling…must be a bad day! You know the ‘why me!’ kind have I been such a horrible person I deserve this…! The kind of thoughts you don’t want to burden your nearest and dearest with.

Hi aramis12

I’m sorry to read that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes Sam, BCC Facilitator

Hi Aramis 12

I am sorry that you are having a bad time with Herceptin but it’s interesting to hear. My partner had her 9th dose last week and is, like you, really struggling with it. It does seem that many women sail through it but this has not been our experience and it does not help that chemo nurses and some oncologists can be a little bit dismissive of the side effects that my partner is experiencing. For us there is no quality of life at all but we will grind on and hopefully come out the other side. I hope you do too.

Take care and good luck.

Hi Sam BCC!
I seem to be the only one with nasty side effects! I had a bad night last night and an even worse day…I can hardly breathe and have absolutely no energy for anything! I’m petrified they take me off the Herceptin and at the same time I dread every infusion because I know I’m going to feel like this after…I just want to be me again!!! I was just so happy before all this started…it defiantly burst my bubble. Aramis x

Just had my bone scan results and they are clear!!! Thank God! Still feel the same…breathless and really really I’ll…7 Hercectin treatments 11to go…oh I dread them …, at least I’m alive. And they give me a chance of survival! God loves a trier !

Aramis, so sorry your having problems with Herceptin. I have had 16 and am on it for a long as it keeps working for me, I do know some have asked for their infusion to be done over a longer time, I have mine in half an hour but some have it over an hour because of SEs and they have been better, it’s worth a try ?
Good news about bone scan result :slight_smile:
Jean

‘H’ is the bane of my life! I thankfully only have two more to go but I recognise all of the symptoms you discuss, I am at present so very tired that I am permanently glued to my chair! I had gone back to work for some short shifts but it is making things worse and I feel so horrible that I can’t cope for the short time I am there! Cue wonderful doc who has taken the matter out of my hands and signed me off for two weeks to ‘be tired’ if I want and sleep if I need but it is the most draining thing ever! I also get the breathless thing but not all the time usually when I walk too far or try walking too fast, worst of all bending down to washing machine and when loading fridge it is scary but my heart echos are clear so quite flummoxed really I can only put it down to the ‘H’ which my lovely chemo nurses tell me can and does affect women like this but as it isn’t everyone they don’t tell you? I haven’t read this on the S/E list apart from the other one which I do get chills,I start by being so bone cold it takes ages to get warm again so hence blankets ,fluffy DG and sticking the heating back on when poor hubby is hot!!! Good luck as long as the heart scan/echo is coming back O.K I am just plodding to the finish and it will be worth it 'cos I have then chucked everything they have got at it! Em xxx

I too am having awful side effects. I feel 90 year old and i am only just 42 (March 21st). My bones ache terrible, i am so so tired all the time and out of breath. All the skin on my fingers is really dry and i have cracks on all my fingers which makes it difficult to do anything. I always have a sore mouth with i noticed yesterday a tongue that has all little black bruises down either side.I had immediate reconstruction after a mastectomy and the implant has now been inflated twice and is being left to stretch the skin for 4 months but the pain has never gone away and the corners of the implant feel like they are sticking out. I struggle to sleep at night cause i can only sleep on one side and cant sleep on my back cause it feels like someone is sitting on my chest and i feel like i am struggling to breathe. It was also discovered about 6 weeks ago that the Herceptin is affecting my heart so i have now been put on more medication to stabilise that. I had another MUGA Scan this week to see if the medication is working and will get the results from my oncologist next Tuesday. The thing is as bad as i feel i really dont want to come off Herceptin cause i am afraid the cancer will return,but on the other hand i dont fancy a heart attack or stroke. Personally they can give me FEC any day of the week cause i felt better than this on that.
Oh well moan over there are people worse off than me, keep smiling x x x

OMG!

You sound worse than me…I feel like an old lady too! But, like you I’d rather stay on Herceptin and take my chances than have it taken away from me after all the aggressive treatment I’ve put my body through! I’m the same as you I found the chemo difficult but easier to take than Herceptin! The thought of another 10 scares the hell out of me…by then I think I’ll be crawling on my knees! xxxxx

hi has tillybob said,
when i had my herceptin last time i had two in the hospital then i started having the rest at home and they done it over two hours i did not have any side affects what so evermaybe you can menthion this to your hospital, its much better at home in your own inviroment.
lorraine x

I was having H over 1 1/2 hours at home but getting palpitations so increased to 2 hours - this seems slightly better and the only noticeable SEs I get are extreme fatigue on the day (and quite tired for a couple of days after), a bit breathless and continuing palpitations. Does anyone else get palpitations? I’ve had the 3 monthly echo twice now, with no change in function and also a 24 hour ECG - both show that there appears to be nothing irregular but I still have very strong palps. They are different in the first week and make me feel weak, but I am constantly told that all is well …

Anyway, I saw a different clinical onc last week to discuss rads. I mentioned my palp fears, how I hate having it and also that I had heard that H is normally given for only 6 months in Europe. He said that it is given for 12 months in UK as that is what the trial was for but trials have also been done elsewhere that show success after only a 9 week treatment ie 3 cycles; so he is happy for me to stop treatment now if I wish as I have had 6. That is a hard decision for me to make as I am not an expert.

Saskia

Evening hope you don’t mind me joining. I have just had no 7 of 18 and I too suffer the side effects you have mentioned. The tiredness is horrid breathlessness, aching legs flu like symptom runny nose. I thought it was effects after chemo and rads but it isn’t. Its nice to know I am not alone and we can share and help each other with our experience. I feel like I am in my 90s some times. I come home from work and I am in bed at 6 some nights.

Hi

I had really strong palpitations both on chemo and when n Herceptin alone. I had all the usual tests and all negative. I finished Herceptin in Dec and still get them occasionally and I know stress is sometimes a trigger, but then at other times they just come out of nowhere. There is a thread on side effects from Herceptin you could look at. I with post a link.
share.breastcancercare.org.uk/forum/herceptin-side-effects-quick-poll–t32818.html
Dx

Hi ladies,
Just wanted to add to this as I have been where you are and had herceptin for a year which ended last june. My nails were a total mess with bumps and ridges, tiredness was awful which I didnt expect on herceptin, bone ache, funny tingling feet when i went to bed, runny nose and flu like symptoms. What kept me going was that there is an end point to the treatment and you must focus on this end point even though its very hard when you have to go through it every 3 weeks and feel so rubbish. I too had mine at home and over I think 1.5 hours which made such a difference.
For me herceptin must have helped my cancer stay away as sadly within months of finishing treatment I had a new huge lump in my other breast pop up (docs unsure if new primary or a secondary spread) and a recurrence rash on my mastectomy scar. Im on a treatment now called TDM1 which has herceptin in it. unfortunately i get lots of the same side effects if not worse that just straight herceptin :frowning: Im on this for as long as my cancer is controlled. I guess what im saying is that all cancer treatment has nasty side effects and when its taking over your life it does makes things miserable. I try and do things when im having good days and dont punnish myself on the days im unable, You must all focus on the end point to treatment if there is one and on a positive once I finished treatment I almost felt normal again, less tired, better nails etc just a huge shame it sadly didnt last for long.
I hope this herceptin treatment is the last of the treatment for you and your cancer stays away and for those on it for life lets carry on supporting each other through what is a horrible time at times and focus on the nice things in life… X Janine

Hi Janine thanks for posting. I am so sorry to hear you have to start again with treatment. I hope the side effects are small.I agree with you about not being so hard on ourself but i get so frustrated with my self as energy levels and fuzzy head are the worst! We have to keep up and be thankfull we are here and enjoy life to the fullest.Hope the new treatment is going well.
Silver x

Hi all
So sorry to hear you’re all having such a rough time of it with one thing and another. I have just finished my 18<sup>th</sup> course of Herecptin 2 1/2 weeks ago and the running nose is slowly stopping, the cough is still with me but I have acid reflex so had put it down to that. But the worse thing is my forgetfulness. Yes I am still very tired all the time still but I am sure that will pass in time. I went back to work during my Herecptin and really wish I hadn’t as I made such stupid mistakes and I put it down to tiredness. The lack of concentration is the worse part of this in my eyes especially is if you’re working. I have ended up having to speak with various medical staff over this as it has got out of hand. I even forgot the veg the other night and burned the pan, I have also left the gas on a low flame after cooking and not noticed till the next day. I Never did anything like this before and it really upsets me now as I don’t know what to do to improve it. Tiredness and foggy brain are not listed as a side effect of Herecptin. I have stated to my Herecptin nurse that there are a lot of issues never dealt with or listed which should be with this drug. I know we need it but at least recognize, or ask about any side effects people are experiencing to help the next ones who have to have it. Maybe we all should start telling the staff just what is happening and that we want it noted. The one thing I have seen from all the fabulous people I have met who are going through treatments is we all tend to suffer in silence with the ailments until they either get out of hand or just worry us sick. I know we all have each other on here which is amazing let me tell you but we need the medical staff to know just what is really happening and to start note these side effects, this drug is still in its infancy.

I had my first one on6th June with tax and cyclophosphamide , I havtabac a really bad reaction to the chemo, and am cosnide ring not having anymorehe chemo , as have son who has been diagnosed with cancer too, and can’t cope with being I’ll liken have been. Xxxxxxxx

Lisa that’s awful? Can they not give it separate ? I had my chemo first then radio then Herceptin and tamoxifen together. Was it not the combination of it all together ? Hope you are ok xxxx

I have had no 10 a week ago and I am just starting To get my strength back!! I was so tired and weak. I have some good treatments and some bad where is makes me feel so unwell. My eyes are really tired dry and sore. My legs hurt so much
Is any one else feeling like this.
Kind regards
Silver x

Hi, hoping this may help. Due to effects on my heart with Herceptin I’ve been referred to a cardiologist for further tests and when I told her how breathless I got and how bad the water retention was she looked at my blood results and the times when it was worse I was very anaemic. I’ve increased my iron intake naturally (brocoli, liver etc) and have noticed a significant improvement. It’s worth a try :slight_smile:

L4W