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
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.
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.
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
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
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
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
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.
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.
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.
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
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.
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.
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?
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
I am sorry to read that you are struggling, I am sure your fellow users who understand how you are feeling will be along with support and our helpliners are on hand 9-5 Monday to Friday and 10-2 Saturday on 0808 800 6000
I just wanted to add to this thread for anyone going through herceptin at the moment. I had my last dose at the end of January and am now feeling much much better. I still have odd aches but they don’t consume me quite as much as before probably because I feel much better in myself: not as tired or dizzy or just generally unwell. In fact I feel great (bone pain aside-now blaming Tamoxifen for that). So hold onto that.
I have had 8/18 herceptin and side effects so far:
Flaky fragile fingernails
Dry mouth and weird tongue
Fatigue, much worse for 24 hours after Herceptin
Itching to arms and legs
I know I shouldn’t complain and I’m normally a very positive person, but there are the occassional days when I feel really down and fed up
I tell myself I’m nearly half way through now so I will soon be finished. The odd thing is that in a strange way I almost look forward to going to hospital every 3 weeks because I feel as though something is still being done which reassures me. Anyone else feel like that or is it just me?
