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Herceptin side effects ( quick poll)

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Lucy_BCC
Lucy_BCC
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‎30-12-2013 08:21
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‎30-12-2013 08:21

Re: Herceptin side effects ( quick poll)

Hi jconn13
Welcome to the BCC forums where you will soon have support from your fellow users, our helpliners are also on hand with practical and emotional support on 0808 800 6000, lines are open weekdays 9-5 and Sat 10-2

Take care
Lucy BCC

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‎30-12-2013 06:04
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‎30-12-2013 06:04

Re: Herceptin side effects ( quick poll)

I was happy to read about what you are going thru, because I am also feeling like I am 100 when I wake up in the morning. My hands are swollen and hurt, my elbows and the muscles in my arms and shoulders and neck feel stiff. My large toe nails are falling off but I thought that was due to the chemo. I start my 6 1/2

weeks of radiation next week. and then they start me on tamoxifen for ten years. WOW. Its funny when I told

my doctor about the puffiness I feel and the swollen hands they did not know what was causing it. So I was very happy when I came upon your blog. If anyone can tell me how long I can expect this to last I would really

appreciate it.

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Mindy63
Mindy63
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‎30-12-2013 12:24
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‎30-12-2013 12:24

Re: Herceptin side effects ( quick poll)

I am about to have dose number 17 and have been ok but am now very very tired and a bit shak yand weak-feel kind of post viral symptoms. Also twitching eyelids for last 4 months. Anyone else get this?

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Curleychris
Curleychris
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‎16-08-2013 05:42
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‎16-08-2013 05:42

Re: Herceptin side effects ( quick poll)

Hi everybody I have had my 7th herceptin today am also on tamoxifen so find it difficult to differentiate which is causing symptoms.
Weight gain
difficulty sleeping
Hot flushes
Tierdness
abdominal discomfort.
Tingly fingers
Sore nose dry not runny
Headache day of transfussion
momentary lightheadedness.
Have had aches and pains hips back and feet.
Just starting back to work so wondering how i will fare.
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Curleychris
Curleychris
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‎16-08-2013 05:25
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‎16-08-2013 05:25

Re: Herceptin side effects ( quick poll)

I am new to the forum. Have just had my 7th herceptin today so it's good to read how others are experiencing all this I too am on Tamoxifen completed chemo end of May. Had an awfull time so not finding herceptin as bad. Just feeling a bit fed up today so thought it time to take the plunge.
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‎07-08-2013 06:46
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‎07-08-2013 06:46

Re: Herceptin side effects ( quick poll)

Had first herceptin treatment yesterday. Watery eyes when administered over 90 mins then developed aches in neck, shoulders, back and hips. Felt tender all over and slight sore throat. Took pain killers and felt better today apart from headache and tiredness. Will be interested to see whether symptoms get better or worse with each dose. still, if it makes me feel like this lets hope it makes the cancers cells feel bad too 🙂
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‎29-07-2013 04:35
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‎29-07-2013 04:35

Re: Herceptin side effects ( quick poll)

Hi, I have been told that I will be given Herceptin and chemo but I have been reading about side effects of Herceptin. I have ischaemic heart disease and take daily medication for it. Has anyone else been in my position and are there alternative drugs that could be given as an altenative. I'm seeing the onc on the 8th and would like to be prepared when I see them. Thanks for any help or advice.
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Curleychris
Curleychris
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‎27-07-2013 06:09
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‎27-07-2013 06:09

Re: Herceptin side effects ( quick poll)

Hi I am new to the forum and have been reassured to read about the experience of others.
I have had 6 herceptin and like you it has been easier than chemo.
I have also had times when I feel no or slight side effect's and others' when I am feeling not so good.
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Mindy63
Mindy63
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‎04-07-2013 12:43
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‎04-07-2013 12:43

Re: Herceptin side effects ( quick poll)

Anyone experiencing low white blood counts on Herceptin?

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xwelcomex
xwelcomex
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‎30-06-2013 12:10
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‎30-06-2013 12:10

Re: Herceptin side effects ( quick poll)

:

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pesteringpixie
pesteringpixie
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‎14-06-2013 10:00
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‎14-06-2013 10:00

Re: Herceptin side effects ( quick poll)

Hello lovely Herceptin Heroines

thank you so much for responding, this site just continues to amaze me With the support and encouragement available.

I worked all the way through treatment, just cut down a bit on the chemo week. I rum ny own business so very hard to take time out. I do tend to live at a fast pace with work, fund raising and travel.. So perhaps all that is contributing.
i realise my Herceptin ses are high class problems compared with so many ladies who are dealing with secondaries and reading the responses on here has caused me to give my cotton tail a good tug and just to grit it for these last 3,
think one of the things that has compounded it is our last holiday just over a week ago. We were in New York and found myself really struggling with it all and 2 afternoons just had to go to bed. OH not impressed. We have another holiday booked for end of July, one of the river cruises that involves a fair bit of walking and I am getting so anxious that I am not going to be able to manage and spoil it for my OH.

I know all this crap isn't my fault, but my treatment has been going on so long that I think my OH is just totally fed up of it. like him, I expected that once the chemo was out of my system I would be dancing the fandango, but Herceptin and Arimidex are just so blooming tough.

jackie I am in awe of your managing housework, OH does ours or it doesn't get done. So pleased you posted, you are just one ahead of me so perhaps we can see these last few through together.

pixie xxx

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Jo_BCC
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‎13-06-2013 07:24
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‎13-06-2013 07:24

Re: Herceptin side effects ( quick poll)

Hi pesteringpixie

Sorry to hear you're feeling this way, if you need a good listening ear, then the helpline team are just that free phone call away to give you some much needed support - give them a call. 0808 800 6000

Take care,

Jo, Facilitator

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sarahlousie
sarahlousie
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‎13-06-2013 06:31
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‎13-06-2013 06:31

Re: Herceptin side effects ( quick poll)

Hi ladies
As I have lung secondaries I shall be on herceptin forever I've had around 26 so far I am also on Tamoxifen at the moment and beleive most of my SE are to do with the Tamoxifen and not the herceptin. Herceptin is my miracle drug.
tingly pins and needles in hands and feet also bad joint pain (tamoxifen)
weight gain (nearly 3 stone in a 2 years since dx definately attribute this to the tamoxifen as I was on the herceptin alone with chemo and prior to my mastectomy for a year and didn't put on any weight until I added the tamoxifen)
Migraine
Bloatedness
Stuffed up nose when having infusion it tends to pour (a definate SE of herceptin)
Terrible nails (some toe nails have fallen off recently) and painfully slow hair growth annoyingly on top
hot flushes (recently these have started to calm down a bit but its been 2 years of hot flushing constantly) these are ususally acompanied by intense inner chills that hurt so bad I take a co-codamol
On waking up in the morning finding it difficult to move around tend to shuffle and feel about 100 years old (real age 45) sometimes unable to walk, spaced out feeling and have fallen over quite a lot recently
Swelling to ankles, wrists, fingers, back of knees
Like I said before I beleive most of the SE are due to the Tamoxifen and not the Herceptin. Hope this helps someone. Sending you all love and light sarah xx
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‎13-06-2013 06:05
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‎13-06-2013 06:05

Re: Herceptin side effects ( quick poll)

Hi Pixie,
I know exactly how you feel. I started chemo in March 2012 and had no 16 herceptin yesterday and my treatment plan is identical to yours - including arimidex. I'm hoping that once I've finished herceptin in6 weeks time then I'll feel a bit more normal - I know it'll be a different normal but normal please! I work full time again now and seem to sleep the rest of the time. Housework that used to take 3 hours on saturday morning takes all weekend so it's work and sleep for me at the moment. Not much fun is it? My onc says that it takes as long for the body to recover as the time of our active treatment - so 18 months in our case!!!!!
I'm trying to focus on the end game now - it can only get better after all!
Take care and keep smiling - it takes less effort than frowning so you'll have more energy for something else!
Jackie x
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vercors
vercors
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‎13-06-2013 05:37
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‎13-06-2013 05:37

Re: Herceptin side effects ( quick poll)

Wonderful Pixie,
I had 18 Herceptin between 2008 and 2009 with no side effects at all. I have been back on it since December 2011 when diagnosed with secondaries and will be for life or as long as it lasts.
Have you talked to your onc about those side effects? Did you over do it, work, happy bags, travels?
I certainly would go for professional advice BCN or onc or possibly ask your GP to put you on medical leave for a couple of weeks.
Look after yourself. XXX

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‎13-06-2013 04:26
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‎13-06-2013 04:26

Re: Herceptin side effects ( quick poll)

Oh Pixie

Just sending you a supportive hug, I have Herceptin in my line up of treatment which starts of the 21st June with TC chemo, not expecting to start Herceptin until sep/oct. I'm sure some lovely ladies will be posting soon to help you round with the hoover!
hope you get some respite soon.

Trish x
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pesteringpixie
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‎13-06-2013 04:12
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‎13-06-2013 04:12

Re: Herceptin side effects ( quick poll)

Hi

Just bumping this thread up becasue i am having a day of feeling really really fed up with my herceptin treatment.

Have just had cycle 15 - so 3 left and i am almost at the point of picking up the phone and saying 'Go away" - have had enough.

I started a thread in here at the beginning of chemo in April 2012 and have made lifeliong friends. but I now see them allgetting so well, doing 10 mile BCC walks, going to Gyms, looking gorgeous... and me? I am on my knees with the cumulative fatigue of herceptin.

I work all day Monday, tuesday, Thursday and Friday and spend every blooming Wednesday in bed - fast asleep.

I ache, my nose is driving me to distraction with dripping, snuffles and big blood encrusted bogeys, my uper arms feel like I have been hit with a baseball bat.... and i am walking like a 90 year old. And I am so bloated and fat I look 9 months pregnant.

Aaaagh... trying to be grateful for the £3000 bag of gunk i get every 3 weeks, but boy have i had enough.

please, some wonderful lady tell me how long it takes to pull up after all of this. i want to feel well again and be able to push the hoover round without having to lie down afrterwards.

I have done surgery, chemo, 25 rads, 18 herceptin and am on arimidex. I felt really well until they decided to make me better.

Pixie xxxx

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‎30-05-2013 01:33
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‎30-05-2013 01:33

Re: Herceptin side effects ( quick poll)

Hi there ladies.
I stumbled across this forum whilst researcing side effects of Herceptin. My mum is due to start treatment on Monday and I am going to spend the day in hospital with her to keep her company. I wanted to know what to expect.
I would urge all of you that have described side effects to head to www.rxisk.org. You report your side effects there and it helps to inform other people and health professionals. They will also provide you with a report that you can take to your GP/ nurse/ doctor to say 'Look I'm not making this up, other people are suffering too.' The more people taht do this the more chance there is of these side effects being recognised and treatment being given.
The paragraph below is from the rxisk website;
No one knows drug side effects like the person who is taking a pill.Yet your voice is increasingly being silenced.You and your doctor may have been told there is no evidence linking the treatment you are on to the problems you are experiencing. This is because most data on prescription drugs is owned by the multinational pharmaceutical companies who run almost all clinical drug trials (60% of which are never reported). They simply are not sharing data that may affect their bottom lines.There is a gap in the data that only patients, doctors, and pharmacists can fill.


I wish all of your ladies luck with your futures and urge you to think about rxisk.org. Thank you for the help you have given me
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‎05-04-2013 09:20
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‎05-04-2013 09:20

Re: Herceptin side effects ( quick poll)

Thanks for all these helpful posts. I have just come off chemo and am continuing with Herceptin and am on my 7th at present. I will wait to see what, if any side effects I have now without the addition of the chemo. One thing I would lke to suggest if people haven't already done so or do not know - it is very helpful for drug companies and in turn medical professionals and regulators to know about side effects of drugs. Any individual can post them to the following site yellowcard.mhra.gov.uk or you can ask your Gp or I guess your consultant to do it through the Yellow card System. These adverse reactions are then categorised on spreadsheets for frequency. I haven't tried it myself yet so not sure how well it works but you may want to.
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Mazzalou
Mazzalou
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‎28-03-2013 09:46
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‎28-03-2013 09:46

Re: Herceptin side effects ( quick poll)

Rest assured Pesteringpixie, as a former nose-dripper myself, your sleeves will one day be tissue-free once more!

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pesteringpixie
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‎28-03-2013 05:49
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‎28-03-2013 05:49

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.

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Mazzalou
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‎22-03-2013 10:50
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‎22-03-2013 10:50

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

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raechi
raechi
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‎22-03-2013 03:56
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‎22-03-2013 03:56

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 🙂

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‎13-03-2013 12:21
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‎13-03-2013 12:21

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.
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vercors
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‎21-02-2013 11:54
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‎21-02-2013 11:54

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

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susanmary
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‎21-02-2013 08:39
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‎21-02-2013 08:39

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
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raechi
raechi
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‎28-01-2013 06:28
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‎28-01-2013 06:28

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

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cornishgirl
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‎28-01-2013 12:27
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‎28-01-2013 12:27

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
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raechi
raechi
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‎28-01-2013 11:48
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‎28-01-2013 11:48

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

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Midge
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‎19-01-2013 03:30
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‎19-01-2013 03:30

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

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3network3
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‎19-01-2013 10:05
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‎19-01-2013 10:05

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.

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tigerpig
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‎17-01-2013 08:59
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‎17-01-2013 08:59

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!!

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‎15-01-2013 07:35
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‎15-01-2013 07:35

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! )
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‎06-01-2013 11:01
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‎06-01-2013 11:01

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
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samos
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‎23-12-2012 07:27
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‎23-12-2012 07:27

Re: Herceptin side effects ( quick poll)

Hi Ruth - you enjoy the festivities, after chemo, for most peeps, Herceptin is a walk in the park:)
Sue x

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Rufabug
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‎21-12-2012 04:40
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‎21-12-2012 04:40

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.
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samos
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‎21-12-2012 02:17
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‎21-12-2012 02:17

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

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Jo_BCC
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‎19-12-2012 07:23
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‎19-12-2012 07:23

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

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Rufabug
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‎19-12-2012 04:34
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‎19-12-2012 04:34

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!
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samos
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‎14-12-2012 08:58
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‎14-12-2012 08:58

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!

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cornishgirl
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‎14-12-2012 07:40
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‎14-12-2012 07:40

Re: Herceptin side effects ( quick poll)

Ive had 8/18 Herceptin, had a couple at home but didnt like it so got transferred back to the hospital for it (long story lol) SEs are a runny nose, breathlessness on excertion and a tickly cough which is driveing me crazy , hair growing painfully slow too. Last Echo was ok at 61%,am due another one new years eve!.
Linda x
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samos
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‎14-12-2012 02:22
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‎14-12-2012 02:22

Re: Herceptin side effects ( quick poll)

I've just had my 14/18 Herceptin, which I have administered at home - wonderful service, I highly recommend it!
I don't get any se's to speak of, just a bit of a runny nose. However, my hair is growing very very slowily, i recon it's about half the normal pre chemo rate. And that's it.

Sue x

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‎25-11-2012 09:49
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‎25-11-2012 09:49

Re: Herceptin side effects ( quick poll)

I had a lumpectomy and reconstruction just a year ago. What a year it has been! Chemo, radiotherapy a Portacath and now Herceptin. I am on my 8th of 17 doses of Herceptin. I am also having it at home. My 1st in hospital was a disaster as my body went into shock. Now they give me the antidote before the Herceptin dose.
It wasn't entirely an unhappy year though as I lost 3 stone (mainly whilst on Chemo) I had an expensive gastric band done 6 years ago to no effect. I have lost half my previous unwanted bra cup size too. Wow! a few years back this was going to cost several thousand £s to achieve. I think it might have been even better had my surgeon been to dressmaking classes as a couple of extra darts would have made them outstanding although his needlework was quite good. All in all, with my hair growing back into a blonde quirky style and feeling smug in my new sexy bras, I look years younger than my 74. Of course no one wants Cancer to achieve a makeover but at least there has been some credits to my year. I have bought a dehydrator too, to try to eat more raw foods to fight my HER2 cells. Courgette crisps are my favourite!
I have been reading on here about the side effects and was suprised at how many were suffering joint and bone pains. My knees became so bad that I hobbled to the doctors and begged to find out the cause. I was duly sent for an x-ray which showed arthritis (but not bad enough for surgery) This had to be something serious I thought as living alone I need mobility. I am dosing myself an hour a day on one of those circulatory machines and it does seem to help the cramp symtoms, or has my imagination gone into overdrive. I am also having problems with nail splitting, runny nose and swollen ankles.
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Chico
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‎24-09-2012 09:59
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‎24-09-2012 09:59

Re: Herceptin side effects ( quick poll)

Hi I am having number 4 out of 18 tomorrow and have been in so much pain in my muscles/ joints it makes me feel nauseas! I have to go to bed, but the pain wakes me up, sometimes my husband says I cry in my sleep, I am unable to turn over in bed my hands are sometimes numb as if I have been sleeping on them, I am alsoback at work and need a cocktail of painkillers to get through the day, my onc seems unconcerned and she told me to take evening primrose, to say I was gobsmacked would be an understatement!, anyway in desperation I rang my BC nurse and she told me to stop taking Letrozole for a month to see what happens, That way they can see if it's the herceptin or letrozloe that is causeing the problem, well it's still just as bad. I feel so down as I wasn't expecting this but it's totally ruling my life, at least with the chemo I knew that in week three I would be able to do stuff, why do the oncs not take the side effects seriously.





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‎21-04-2012 01:23
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‎21-04-2012 01:23

Re: Herceptin side effects ( quick poll)

hi ladies,
i was dx fom the start sept 2010 with ibe, had all the standard treatment, chemo first, then mx and reconsruction which i dont have now due to local reccurances, but now i have lung mets, dx seven weeks ago i am having taxol weekly and eeling well so far+ herceptin which i had last time with taxotere and fec had all the side affects you can think of lost loads of weight due to diarroeoa it was horrendus, plus i could not finish my last three cycles of herceptin because of heart issues heceptin was stopped for four months and was given heart tablets betablokers i think and i am now fine with it all, plus putting loads of weight back on i feel great so far, having ct next thurs to see if its all working.
hugs to you ladies x

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tired1
tired1
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‎20-04-2012 08:46
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‎20-04-2012 08:46

Re: Herceptin side effects ( quick poll)

I have herceptin at home too and found the second nurse so in tune with my needs/fears/etc that I rang and asked if I could have her every time, which they said was fine (bar holidays, etc). Fantastic. She adminsters the dose over 2 hours which seems to lessen the palpitations and other SEs but I still get bad palps at various times over the 3 weeks.
I've also now got sciatica (bone scan next week to check for nasties - more stress with the waiting game) and have been lent a TENS machine for the pain. However, it also gives me palpitations. Anyone else had this? Big shame as it was quite effective.
My onc told me this week that "We always say that H has no SEs as they are so rare." Are we that unusual?

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sarahlousie
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‎20-04-2012 04:33
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‎20-04-2012 04:33

Re: Herceptin side effects ( quick poll)

Hi Ladies,

Vecors - Ditto I am on herceptin for life or for as long as it works which thankfully it seems too be at the moment, I was dx with both primary and secondarys all at the same time and have been on herceptin since the beginning back in March last year, god knows how many I've had must be around the 19 - 20 mark, I have herceptin administered at home and every time a new nurse comes along they always ask the same question 'how many more have you too go"? ummm forever!! Although having said that one nurse told me she'd been giving herceptin to a lady for 9 years I found that information very encouraging.

SE are few but mainly very stuffy nose like sinus are blocked, I do get headaches but had the same migraine/sickness headache before I was dx with BC and think its to do with hormones and not herceptin, usually lasts a day and I spend that in bed not moving otherwise I am violently sick. Heart palpatations come and go but my heart scans are good. Tight chest and breathlessness again comes and goes not all the time.

Love and light to all
Sarahlousie xx

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vercors
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‎18-04-2012 07:53
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‎18-04-2012 07:53

Re: Herceptin side effects ( quick poll)

I was told that Infusion through MX side is a big no. Some onc are allowing blood to be taken through mx side.
I am on herceptin for as long as it works for me. I had 6 so far but had 18 back in 2008-2009. My veins are knackered and consider having a portacath fitted. I will discuss it with my onc in June.

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trudy2010
trudy2010
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‎18-04-2012 07:48
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‎18-04-2012 07:48

Re: Herceptin side effects ( quick poll)

Hi Heather,
I had a hickman line inserted so i didnt have to have over 12 months of cannulas!
My friend struggled for about 9 months on chemo/herceptin and then she opted for a line too, for the final 5 months of her treatment.

I really admire you ladies that can cope with the cannulas, I'm such a baby!

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tigerpig
tigerpig
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‎18-04-2012 11:24
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‎18-04-2012 11:24

Re: Herceptin side effects ( quick poll)

Morning Ladies,
Just a question for you ladies who have finished Herecptin or nearly finished.I have had my 4th Herceptin,just wondering how your veins held out and if any of you had to have iv in mx side.Is it ok to have in mx side or not?
Heather x

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