Member
Posts: 435
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Afternoon ladies

I haven't posted here previously as wanted to be sure any s/es i talk about are actually due to the herceptin.

I have now had 11 cycles and finished chemo last July. I seem to do okay with Herceptin but I do have one very very bothersome s/e. it has affected my sinuses dreadfully. They had already had a bashing from rhe cyclophosphamide and rhe herceptin has compounded it. I find the effects culmulative and each cycle it gets worse.

i leave a tissue trail everywhere, my nose never stops running, it gets full of disgusting crusty bloody sores and I snore so bad my husband is in the spare room.

however, I work full time, and although I get tired and easily puffed, compared to chemo, it's a walk in the park. Just so very very grateful to be able to have this wonderful very expensive drug.

i am given piriton and hydrocortisone at each infusion to lessen any reactions.

my last herceptin is in August and I live in hope that my sinuses will start to recover.
Member
Posts: 694
Registered: ‎01-01-2010

Re: Herceptin side effects ( quick poll)

Take a look at the Stamina after herceptin'posts and you should finish reading them with a smile on your face as I have come to the conclusion that one of the side-effects of herceptin is that it gives you a warped sense of humour!
xx
Member
Posts: 467
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Well an update on my Hereceptin reaction. I have now been taken off it after 10 rounds due to developing hyper sensitivitY pneumonitis. Basically I have had an immune response in my lungs which has caused decreased lung function. No more Herceptin for me ever. Ah well :-)
Member
Posts: 3
Registered: ‎13-03-2013

Re: Herceptin side effects ( quick poll)

Hello everyone, this is my first post and I'm just about to start herceptin tomorrow,well today now. Thought I'd have a quick look at the side effects and fingers crossed I'll be one of the lucky ones and breeze through! But glad to be forewarned as to what to look out for. It's hard to always keep positive and looking forward, having just recovered from one treatment you get thrown straight into the next! But it's good to chat.
Member
Posts: 593
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Susanmary,
i was more achy on the first herceptin and after that none of the side effects described by others. The first herceptin is a loading dose, so this might be the cause of your discomfort. Take it easy and try to relax. Good luck for the rest of your treatment.m
Member
Posts: 85
Registered: ‎21-10-2012

Re: Herceptin side effects ( quick poll)

Just found this thread. So far have only had one herceptin, had it with before third Taxol. I have been more achy than usual.
I have read with interest the side effects, I suppose I will not know whether mine are caused by herceptin or taxol until I have finished with taxol.
I had chest discomfort during my first herceptin infusion so it was stopped, I had a ECG which was normal then it continued with no further problems. i wondered if my anxiety caused this. Anyone else had this experience?
susan x
Member
Posts: 467
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Thanks Linda for taking the time to reply. I do actually have piriton before my herceptin as I have a mild allergic reaction ( my skin goes red, tight and itchy) The cough seems to come regardless. Weirdly it's worse in the evening. I am getting peeved with it now as I cough so much I am sick. So my appetite has now gone out the window as I am scared of being sick. My GP thought it was whooping cough but now I am not sure. In an odd way it's reassuring to find someone else has the same symptoms although its poopy that we suffer at all! federally hope you manage to get sorted. Keep me posted if they manage to find what's causing it.
May be try the piriton, it could work for you.
Rae
x
Member
Posts: 723
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

raechi, I have the persistant cough and also the shortness of breath with any excertion even carrying any shopping bags a short distance makes me realy breathless as does climbing any stairs its horrible isnt it, ive had the cough for about 5 mths too and have just had my 10th herceptin, like you i was realy worried that it might be secondaries but ive now had a chest xray and a Ct scan in the last few weeks and thank god all has come back fine, it has reasurred me BUT i still worry about the cough and breathlessness ,i am assuming it is some kind of reaction to the herceptin as i start coughing and am breathless as soon as ive had the herceptin infusion some days its better than others and it seems to come and go worse on somedays than others. Am thinking of asking if it would be helpfull to try piriton or something before infusions not sure if it will help but maybe worth a try, its horrible and i realy hate the though of being like this for another 8 treatments , anyway just thought it might help a bit to know your not alone with your symptoms ,good luck with your Ct scan im sure like me all will come back fine and its just the herceptin causeing your symptoms too.
Take Care, Linda x
Member
Posts: 467
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Thank god for this thread - i have been reading it with interest. I have had some of the side effects other ladies listed but was thinking the worst (secondaries). Now it might just be its the Herceptin (i have had 10 lots) :-
My main issues are:
Persistent Cough and runny nose - constantly feeling congested (i have jaf the cough for 5 months now)
Shortness of Breath on exertion (even mild exertion liking climbing one flight of stairs)
Tiredness / Fatigue
Pain in hips and legs
I am being given a CT scan due to my cough and shortness of breath - but i am now wondering if its the Herceptin. Will see what the CT scan says..
Rachael
Member
Posts: 2,130
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Thank you to those ladies who have continued to contribute to this thread. The objective was to let women who were having herceptin side effects know they were not alone. To reassure them that it was being caused by herceptin, not something worse and to help have some confidence when telling their oncologists that they were having difficulties with it. Especially when oncs seem to dismiss it as not having side effects.
It was not meant to scare those having it or waiting to have it. it is not in the same league as chemo, but can still effect peoples lives in a variety of ways.
I found it very reassuring to know I was not alone in having palpitations etc. We are all different and some are effected more than others and I hope there are enough posts on here to let people know that it is possible to not experience any problems on herceptin.
dx
Member
Posts: 778
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

I'll have my 18th and last dose in a few days and can honestly say in comparison to chemo it was absolutely fine!! I would happily have more of it, but alas, they say 18 is enough. Yes I think there are some SE's but really (in my experience) not bad at all. The most noticable I always feel tired on the evening I had the Herceptin and a couple of days after and a runny nose. Really interesting to read about the spilt skin on the thumb as I have exactly this now for the second time on my right thumb, I never thought of blaming Tax for this which I finished 10 months ago!!!! And yes hair is growing in snail speed lol. I started going to the gym in June last year and fitness has improved greatly, do easily 50 min of swimming. i just avoid the gym on Herceptin day as I want to give my body a rest to deal with the drug.
Member
Posts: 477
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Hi,Ladies i last posted way back in April,i now have 2 more doses to go.Last 2 doses they used my mx side and touch wood no problems.Had no choice as veins in good side have had it!!
The time has gone so fast and i wish good luck to all you ladies just starting on Herceptin,some of my SEs:-
My nails are always breaking
Nose is either blocked or running
Eyes sore and itchy
Palpatations now and then
I returned to work after dose 6 and have managed really well,i am very active at work and am on my feet all day,i found that this helped with aching legs and joint stiffness, before returning to work i would struggle to get up and down stairs,my fitness levels have vastly improved.
Iam really looking forward to finishing now,its been a long journey!!
Member
Posts: 5
Registered: ‎15-01-2013

Re: Herceptin side effects ( quick poll)

Hi there
i have had 6 Herceptin so far and thought I had no side effects so far. I have it over 90mins too, so slower infusion.
I have numbness in my finger tips, more so on my infusion arm, but believe this is due to Taxotere (seems to have got worse since Tax finished in Nov).
Princess 2345 said it used to split the skin on her thumbs which was an 'aha' moment for me, as I had been wondering why I sometimes get splits on my fingertips, most recently on both thumbs, almost as if my skin is thinner so splits more easily when dry?
to be honest I don't know what is normal anymore, as have various niggles, and don't know what is specific to Herceptin (taking Tamoxifen, having hot flushes, feeling hormonal, craving sweet things - don't know if this is Tamoxifen or chemopause, mild lymphoedema from rad...the list goes on! )
Member
Posts: 1
Registered: ‎06-01-2013

Re: Herceptin side effects ( quick poll)

Hi Rufabug

dont let the comments scare you, i am on number 10 treatment of 18 herceptin, and would say that your oncologist means the side effects are minor compared to chemo. I have only experienced some fatigue, brain fog at times, and brittle nails. Would love someone to come up with some ideas how to improve the nails, but everyday I am grateful for the treatment I have received, particularly The herceptin as its not that long ago it was a postcode lottery due to the expense! Most of the time you can live like someone without cancer on herceptin, unlike chemo. This is the homeward straight hopefully, so don't let the comments put you off just be grateful and live for every moment!

Paula
Member
Posts: 763
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Hi Ruth - you enjoy the festivities, after chemo, for most peeps, Herceptin is a walk in the parkSmiley Happy
Sue x
Member
Posts: 4
Registered: ‎25-06-2012

Re: Herceptin side effects ( quick poll)

Hi Sue and Jo,
Thank you very much for your replies with the reasurance about Herceptin side effects. I do feel a whole lot better now! I am just going to relax and enjoy my break from all meds and treatments over Christmas and the New Year with my family. I know others are not getting this so I AM LUCKY! But a Happy Christmas to all of you out there - enjoy it as much as you can!
Ruth.
Member
Posts: 763
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Hi Rufabug. Please don't let the horror stories worry you - plenty of girls on Herceptin do just fine! I am one of them, and the three girls I went through chemo with who are also on Herceptin are all doing just fine - two of them are also on Tamoxifen ! No drama.
The analogy I would draw is Childbirth - you hear lots of horror stories, but hey, it's not always bad (my 4 were great) - the thing is those with bad experiences tell the world whereas the good experiences go unmentioned.
Bottom line is we are all different, so yes, we all experience things differently.
Sue x
Member
Posts: 7,026
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Hi Rufabug,

Welcome to the BCC discussion forums, I'm sure our forum users will be along soon to support you and put your mind at rest about your concerns. You are also more than welcome to call our helpline, which is free to call, and have a chat with our staff, 0808 800 6000, lines open Mon-Fri 9-5 and Sat 10-2.

Take care,

Jo, Facilitator

Member
Posts: 4
Registered: ‎25-06-2012

Re: Herceptin side effects ( quick poll)

I am due to start Herceptin 15th January and thought I'd look at this thread to prepare me. What a shock! I am feeling good having just finished chemo (FEC) and was foolishly thinking Herceptin would be a doddle after the chemo. It is mainly antibodies isn't it? Well I was almost in tears reading all the side effects you are all having. I already have breathlessness ( they don't seem to know why) and have had migraines nearly all my life. I really feel scared about the coming year on Herceptin and also hormone tabs at the same time. I am 67 soo have been through the menopause but here we go again! Can anyone reasure me? PLEASE!
Member
Posts: 763
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

My next Herceptin (15) is due on New Years Eve! Next heart echo is early/mid January and has been running around 62% - think it started at 67%.
The slow hair growth seems to be a real common se - although they don't acknowledge it!