Herceptin side effects

[Pam H]

Hi. 
I finished my Herceptin treatment about 18 months ago. Since then I have continued to get stronger and feel back to normal. I have however looked at my lifestyle since then and made some adjustments. I turned to a whole food plant based diet, lost about 30 pounds and went back to the gym. 

[Preet]

Hi pam

Have you finished your treatments? Just wanted to find out what was the out come?

Preet 

[dynawrite]

Hello:

I have been reading the comments by all the women re Herceptin and I am baffled.  The only thing I had to do was have my heart checked every three months to see if it could withstand this strong drug.  I had no side effects.  I took it for one year every three weeks as was prescribed per my protocol.  The chemo was what was so horrible and now I am finishing my second year of Arimidex and have to be careful about bone loss. The more I read the more I realize how complex all of this is.

Patricia

[Danny123]

Hi I was on herceptin which finished Easter this yr 2019 I was on letrozole until jan this yr but could stand the pain no more so my oncologist put me on anastrozole said it was the same as letrozole but was not as many side effects still feel rubbish but can lift my head out of bed  in the morning 

[Chick1]

Hello Suzannah,

Sorry to hear about the bone mets.  That must have been difficult putting up with the discomfort for 9 months.  At least you now know what is going on and a plan can be made about how to manage it with specific treatments.  Wishing you all the best,

Chick x

[PaulaHER2]

Thanks for the good wishes, I’m only 29 days now from my last, I seem to have either a tummy bug or my body is just sorting itself  out but stiffness in the knees is improving, bonus.

[Oh Suzannah]

I have just finished 18 rounds of Herceptin plus Letrozole. I complained about joint pains, particularly in the ribs, for nine months, finally got a bone scan and discovered I have secondary cancer in lots of places. This may not be you, but do ask for a scan.

[Pam H]

So much herceptin. I grumbled at having 18. You make me see how lucky I’ve been. Now 12 months post herceptin I feel great. A few stiff muscles but once I get myself moving I’m fine. 

So good luck with your continued recovery and I wish you the very best of health. 

Pam

[PaulaHER2]

I am so relieved after reading about people who have come off Herceptin. I’ve just finished Herceptin and have had about 170 infusions (you may not believe that as not many have had that amount). I had an aggressive tiny tumor which metatised to my pelvis. Yes I have suffered all the side effects mentioned and have gradually felt it more and more. So when my oncologist suggested having a pet scan again and then coming off I jumped at the chance. I’m only 28 days from last but would like to thank those on this site for giving me hope although looks like it will take quite a time. As usual I’m positive so watch out world here I come.

[Pam H]

I too read about magnesium tablets for the aches. I found some magnesium oil on Amazon. It’s a very fine oil which you can spray onto the souls of your feet where it is said to be absorbed more readily into your system and doesn’t cause problems with your bowels. Or you can spray directly onto your body.
It’s really been a case of trying anything I can get my hands on. My steroid injections in my knees have given me a new lease of life but I’m going to continue using the spray and sometimes soak in a warm bath with a couple of cups of magnesium flakes.
All the very best with your treatment.

[Ali49]

Hi Karebear, i am having Herceptin and Letrozole so dont really know which side effect is from which. I did have very painful knees just after i started taking the Letrofole.

i have stiff joints when i first stand up from any position and hot and aching legs at night.i get an upset tummy and I also felt really tired. I read advice on here to try High5zero tablets. They are rehydration tablets used by sports people. I dissolve 2 in 750ml of water and drink it. They contain magnesium and seem to really help.

MY tiredness and aching legs at nightime seem to have lessened over this last week but I did delay herceptin by a week though as we were away!

I had my 9th Herceptin today so will see how i go. I really hope things start to improve for you xx

[Pam H]

Hello Carebear.
I finished Herceptin in April but didn’t have to have tamoxifen so perhaps my body didn’t suffer as you seem to be. It was only yesterday I commented that I’d rather go through chemo than Herceptin because of the muscles aches and joint pains associated with Herceptin. Twelve months of hell really. Saw the oncologist last week who suggested I see my GP about my painful knees. After shopping one day I made it back to my car and cried my eyes out in Sainsbury’s car park, because one painful knee I could cope with but two was just too much. In my desperation I made an appointment with my GP. He admitted he didn’t know anything about Herceptin and looked it up to confirm the side effects of the drug. I felt hopeless. I’d done s bit of research before I went and told him about muscle relaxant drugs which sometimes help. These are antidepressants (diazepam) and they have helped. As for my knees which was like walking with knives stuck in them I managed to get steroid injections and within 24 hours the inflammation of the lining of my knees had subsided. The relief was just amazing.
You’ve got a long way to go and I can only empathise with you. See your oncologist or your GP and keep on at them until you get help. Do some research of your own (from a reliable source) and be armed with your information because in my experience it’s been a case of “get on with it”.
I do wish you well and for someone who has come through the other side there is light at the end of the tunnel.

[Karebear]

I started Herceptin in april & I feel I've aged 20 years
Am also on tamoxifen so between them both i ache all over especially knees and ankles.
I can't do much walking as my feet blister
Feeling fed up at the minute. I coped with chemo beyyer than am coping with Herceptin

[Ali49]

Sorry for the fat finger typos 🤣🤣

[Ali49]

Hi Beaujangles.

How are you doing? This combination of Her eptin and Letrozole takes its toll doesnt it! I finish Her ceptin in december 2018 too.

I find the aching and hotness in my legs really gets me down! I have also put weight on and i dont think thats helping either!

Do ypu feel down?eachmprning i feel low when i wake up - althpugh o think thos has improved a little in the last week. I am on week 8 ofletrozole and mynext herceptin is my 9th injection! Half way!

Ali xx

[Tebs]

Thank you for taking the time to write, your tale has given me hope and reassured me that what I'm suffering from are side effects not something more sinister.
I wish you well.

[Beau Jangles]

Ali49, I am also on Herceptin and recently started taking Letrozole, finishing Herceptin  Dec 2018!

It was a relief to read your symptoms as they mirror mine.  Thought it was arthirtis setting in or blamed the statin I  am taking.  Thankfully, I am not so tired but find trying to sleep a problem.  The tips of my fingers are tender also.  Can handle the discomfort in legs and hips but not so thrilled about the internal muscles in rib area.  I find walking helps.  

I find some comfort in reading of others in same boat.... haven't met anyone with HER2 + during my various medical visits.  Thought this end bit would be a breeze, guess we must be grateful!

[Ali49]

Wales i feel.just like you! I am on herceptin and letrozole too and think.ots definotely been worse since starting letrozole.

I feel very tired after doing tje simples of things. My legs are achey and feel really heavy!

My herceprin finishes dec 2018 xx

[wales786]

since being on herceptin and letrozole I found myself really tired and my muscles really achy. especially my thighs and calves, I find it so difficult to even get out of a chair .
My hands get very swollen and the tips of my fingers feel as if they're on fire. I've got till January 19 on the herceptin .... please God don't let me feel this way for another 6 months.

[AnnaS]

Hi all, I finished chemo in September last year and have been having herceptin injections every three weeks since with two more injections to go. I'm also taking letrozole daily. I am very stiff and achy, especially after sitting and this seems to be getting worse. As I near the end of my herceptin treatment, I'm beginning to wonder whether it's a side effect caused by the herceptin or letrozole! Is there anyone on this forum who has completed herceptin and on letrozole? Did the aches and stiffness ease for you? As I'll be on letrozole for five to 10 years, I'm hoping herceptin is causing me to feel this way!

[Aine]

Hi ladies!

I am finished Herceptin 3 months ago.

I am starting to get my energy back little by little.

It is only now that I understand just how debilitating Herceptin was.

I had become so used to feeling so sick that it was normal to feel so awful.

Just been to the doctor today - the side effects take a long time to ease off.

I got a steroid injection in my hip to ease the pain.  My hip and knees just got sore after Herceptin and are bothering me quite a bit.

Yes I TOTALLLY agree that the gp does not understand much about side-effects and would recommend going straight to the hospital team - even after treatment ends.

I still have sore hands and feet, joint problems, very bad digestive problems (gale force wind!!!), weak breaking nails, itchy trunk.......etc.

But the runny nose has gone.

The fatigue is improving but I can't believe how tired I have been.  I still can hardly go for a walk most days.

However things will improve Ladies!   I could never imagine that I would ever feel like my old self again.  But there are times when I do so we are all heading the same direction - forwards!

Keep positive

Aine xx

[Yorkie]

Thought i would just update those following this thread just in case anyone else gets the same side effects.  I know we are all different in our reactions, i found Herceptin tough going but are very grateful to have received it. I last wrote with an update at week 10 since my last Herceptin dose of 18.  I am now 12 weeks out. Between weeks 10 and 12 the aching and stiffness has gone just about completely which is wonderful. Strangely though, after begining to get less tired before, the last 2 weeks i have been unbelievably tired again and could have fallen asleep standing up!  The nurse tells me that is quite normal and its because your body is now trying to get back to normal.  Now the tiredness is lifting and i feel so much better.  My hair is growing quickly, i no longer need the loo all the time and i can sleep all night. Nails are still dodgy (that is the herceptin too, i was fine with chemo, they were just darker which grew out) but that is nothing. So if you are having a rough time, do bare with it.  Honestly, it does get better believe me. When you are in it , it seems for ever.  Good luck to all x

[Chick1]

Hi

Hope things have improved for you Maggie and anyone else who has had quality of life affecting side  effects.

Apart from a constant runny nose, I did not notice any other specific Herceptin side effects until I had 2 one session breaks - one for surgery recovery and one for holiday.    After the second break and  each of the next three sessions, I came down with a full cold and cough  lasting a week or longer. Then I tried taking anti-histamines a few days before treatment and did not  suffer the same way again.  I stopped the anti-histamines after about 3 sessions.  Nose is still constantly drippy though - at least it is not sore etc like as when on chemo.

Heart function has stayed within normal limits, with scans showing  LVEF initially at 81%, 72%,71% and 60%.Heart function may be classed as still within good  normal limits but every treatment I have had from chemo, surgery, radiation, herceptin - they all seem to have affected my breathing.  However, I want to complete the recommended 18  treatments so two more herceptin to go and I am hoping that I will feel better a few months  after finishing.  Hopefully I will be able to get back to my previous more active lifestyle. Fingers crossed.

[Jay68]

Thank you Yorkie - I really do appreciate your upbeat and positive messages. I've got 5 more herceptin injections to go - I know that time is going to fly in one way and drag in another but I'm determined to get there! The herceptin is causing failure to my heart and I'm on daily Rampril for it (which seems to be helping - although, of course, has side effects of it's own) but like you I'm so grateful for the invention of Herceptin and indeed view it as a life saver.

Thank you once again x

[Yorkie]

Ok, so now 10 weeks on from my last Herceptin injection.....

The aching has nearly gone but i am still a bit stiff in the legs and hips after sitting down for a long time.

The tiredness is getting less and when a wave comes over i have a drink of water and do something different and it soon goes.

My hair is starting to grow faster.

I should say i am 54 years, was fit and active before.  The chemo knocked me for six. I am very sensitive to any drugs so had many different reactions.  I have been on Tamoxifen for 9 months. Although very fatigued and achey with chemo, surgery and radiotherapy (this fatigue was like being in a fog ) In my case the aching and stiffness + tiredness (this is proper tiredness and feels different to the chemo foggy fatigue if any of you have had it?,)i can put down to the Herceptin.  A Taxane chemo can give you bone ache, which i had but this went 3 months after the end of chemo.  The Herceptin did make me feel worse as the doses went on.  It seems to last for ever but bare with it.  I can assure you it really does get better.

We do all have very different reactions. like you lot who look at these posts; this is what i did to try and see if there were others out there with the same thing.....it really helps to know which is why i have posted a few things which i hope will let people know there is light at the end of the tunnel although very difficult to envisage when you are in the thick of it.  Try and feel grateful for the invention of Herceptin and look at it as a life saver.  Good luck xx

[Trisha69]

Thanks Yorkie, gives me hope.  Had 14 and 4 to go,  Think finish end of May.  Ache so darn much and not sure if the Anastrazole could be the culprit too....  Def seems worse 5 days after injection x

[Jay68]

Hi Donna Fox - just re-reading your message - does it mean you're still on chemo? If so, what regimes are you having as they can have a bearing on your ability to carry on with your usual routines!

[Jay68]

Pam - thank you for the reminder about the drink plenty of water. I was great during chemo and rads at keeping my water intake up - aiming for between 1.5-2 litres a day on top of my usual drinks. However, I'd fallen back on this but towards the end of last week I'd read another tip about this and re-started - I'm now drinking 1-1.5 litres of water and I'm already noticing the benefits.

You're so close to the finish line now, I've only got 5 more to go and I can see the finish line in sight - just got to get there without any delays due to my heart not behaving itself! Good luck for Wednesday.

[Jay68]

Donna Fox - each of us is different and each of us suffer from different side effects that's true but I think with herceptin it's true the more you have the more it builds up and affects you. I've had 13/18 lots and it has started to affect my heart - no day to day problems with that - just having to take a 1.25mg ramparil tablet each day to help and hopefully avoid having to have a break from the herceptin. I also suffer from aching muscles and joints (but these can be helped by gentle exercising - no matter how painful it starts off - it does help) and more recently the runny nose just after the injection leads to congestion in my nose until the next injection.  The first week after the injection is the worse for me and then starts to improve just in time for the next one!  Rather like chemo!   It doesn't affect my driving but I don't tend to go for long distances - leave those to my Husband!  I suggest you read Yorkie's messages - for me that's the inspiration I need to grin and bear the symptoms, after all herceptin really is a miracle drug and we're so lucky it's here and so are we! x

[Pam H]

Hi Donna Fox
Firstly I think each individual reacts differently to the drug from what I’ve seen and heard. I’m 70 this year and my age might have some bearing on the side effects. For myself I’ve only suffered from aching muscles and fatigue. Usually by my next treatment I’m feeling ok. Of course then it starts again. But for the most part it hasn’t stopped me doing things like driving and going about my daily routine. I might do it a little slower but l do get there in the end.
They do say to drink plenty of water. I’m guessing if you’re teaching rumba you are well aware of the benefits of keeping hydrated. I’m also guessing you’re a lot younger than I am and probably a lot fitter which I’m sure is going to help and see you through the next twelve months. I wish you all the very best. I’ve got my 16th injection on Wednesday so almost at the end.

[Donna Fox]

Hi. Thank you all.
I start herceptin on Friday and am worried about joint aches and breathlessness. I teach zumba and want to continue in some way. I have managed to do gentle classes after week 2 of chemo which i am half way through. Do people still drive Ok?
Are the symptoms temporary or for the full 3 weeks between treatments?

[Yorkie]

Week 8 after the last Herceptin dose......this is meant to encourage others!

Following the week 7 message, thought i would post what a difference another week on makes.

I have stopped being woken by aching muscles, i no longer sleep with a pillow under my knees and for the first time in over a year i have been able to drive the car a distance, go shopping and visit friends without wanting to fall asleep! I can stay up beyond 10pm at night and i am begining to feel more normal.

Hope this helps. 

[Pam H]

Hi Yorkie.
Thanks for your words of encouragement. Slept for 12 hours last night and only stirred when I was hurting. I don’t drink as much water as I probably should. Drank 3 liters a day whilst on chemo and can’t explain to myself why I don’t follow the same regimen. I do get lots of fruit and regularly juice fruit and or vegetables.
I’m really pleased to hear the side effects go when treatment comes to an end. With spring and summer on the way I’m hoping to reclaim my body as I knew it and get out and do walking.
Many thanks again and may your health and well-being continue to improve.
PamH

[Jay68]

Thank you Yorkie for your reassuring, supportive and positive message that things do get better!  Herceptin is a wonder drug and I really don't want to complain about it but........  

So thank you for the good advice - it's difficult sometimes to muster up the energy for a walk but I admit it certainly helps!  

5 more injections for me..... and counting....!  

[Yorkie]

I finished my 18th dose of Herceptin 7 weeks ago.  Throughout my treatment my joints and muscles ached so much and i felt constantly tired, it got worse as i progressed with the doses.  After chemotherapy though it is much easier to cope with.  Paracetamol does not touch the pain but after all the drugs i have had in my system recently the last thing i wanted was to take any other medication for it especially for the length of time you are having herceptin.  I found the best thing to do is to drink loads of water, like you did with chemo.  When you go to bed have a warm bath and put a pillow under your legs or between your knees if you are on your side . Eat plenty of fruit as snacks during the day and the most important thing, no matter how much you are aching, go for a walk daily keeping a good constant pace.  On finishing Herceptin, after the last dose, weeks 3 to 4 were pretty bad, i ached even more and felt so tired.  Since then, each week i am finding that i am getting a bit better.  My muscles dont ache nearly as much, i am not so tired, have a little nausea and my brain is coming back.  Just be patient and give it time and know you have a bit of a journey and it gets better.

[Pam H]

Hi there.
Good luck with your treatment and who knows you might be one of the lucky one who escape these side effects. Be positive. I didn’t start to notice side effects straight away but I do think being as active as you can be must help if only on a psychological level. I go to the gym and occasionally swim and I feel good afterwards. Good that I’ve made the effort and it is an effort some days. Get yourself an exercise buddy if you can. You’re more likely to make the effort then. I’ve got only four more treatments and can’t wait to be done with it.
Best wishes. Pam

[Chaffinch17]

I’m due to start Herceptin tomorrow and I’m dreading the aches but as you say thankful that’s it is available. I love walking so really hope it’s not going to interfere with that.

[Pam H]

Thanks Blueash for the link to the film. I watched it and think I blubbered all the way through it. I guess in the grand scheme of things a few aches and pains are a small price to pay knowing how effective this drug is.
Many thanks again.

[blueash]

I think what the doctors mean is that the side effects when compared to chemo are minuscule. They are when you think that a few aches or a runny nose with Herceptin is NOT life threatening. Strong chemo can leave you with permanent damage to your nerves and blood marrow which is why they are always looking at your blood to see if you can have it.

Even if the Herceptin impacts your heart (which is why you have echos) it sorts itself out if they stop giving it to you. So basically the side effects are "statistically insignificant" that does not mean that they do not exist. It is a term used by scientifically minded people to evaluate figures. 

Have a look at this film:

http://zputlocker.com/watch/PGp78bx3-living-proof.html

and then thank this doctor that Herceptin is out there!! 

[wales786]

Hi Pam.  Thank you for your advice.  I also thought Herceptin would be better than FEC-T. I’m in constant pain and always out of breath.  Climbing up the stairs in a pain as I have to stop to catch my breath and to rest for a while before climbing to the top ( there are only 13 steps lol). So so tired all the time and constantly taking cocodamol.   I have made an appointment to see my oncologist to see what can be done .  Anyway I do hope you can stay strong and with Gods help we’ll get over this phase. Take care x

[Pam H]

Can’t wait to hear how you get on. Anti histamines didn’t do much for me either.

[Pam H]

Hello there Wales 786
I thought herceptin would be a breeze after FEC-T chemo. How wrong I was. I’ve been advised in the hospital to see my GP. Well that’s a joke, trying to get past the receptionist is a hurdle in itself in my surgery where it is run entirely by locums. So for my aches I self medicate with an anti inflammatory about three times a day. Seems to work for me. When I can’t sleep as seems to be happening with some frequency I take an antidepressant which was prescribed to ease the burning sensation caused by the chemo going into my tissue instead of where it was supposed to go. I also take a couple of co codamol just before bed if I’m really struggling. Can’t take too much co codamol because of its side effects-constipation.
Herceptin seems to be a necessary evil and it also seems we just have to get on with it. It does seem quite daunting early on in the treatment but all I can say is keep nagging to your care team although all I get is sympathy and no practical help with the side effects. I do find myself forgetting what I was about to do or say but maybe that’s more to do with my age than the treatment.
Best of luck and don’t be scared. It will soon be over. Well that’s what I tell myself.

[maggie aitken]

it exists. dont take any more of this nonsense, hope you have been able to move on since this post! x

[maggie aitken]

well, what a world of fun we live in!  Since last post, I have run out of excuses for pain - shoulders, arms and hands are sore, sometimes extremely so,  and despite a couple of attempts at treatment via GP, it is not easy to get a decent sleep... so off to the surgeon on friday next. But I had to arrange it myself  to get that, on the advice of my highly qualified sis, who is an experiencd medical pro. Dont muck about, go to your specialist, she aid, and so I did. Why isnt there a recognised pathway?

I agree that there ought to be openness and honesty about side effects, because how else can we progress?  Cancer treatment ought to be a partnership between treatment providers and ourselves, and there ought to be mutual respect.  This doesnt mean that recognition of negative issues will make it harder to deal with everyday life - but the feeling of not being an equal and open partner could easily do so. Take note, edical professionals!

Anyway I will report back with progress and send every single bit of love and best wishes to you all... one thing to try, oddly enough, might be Vicks direct on the sore bits. Anything is worth a try - though the antihistamines didnt do much!

[wales786]

I have had 2 Herceptin injections and due my 3rd on Thursday. I have had a runny nose and really bad sciaticaish pain in my legs, have constipation and am always have low energy..   I’m 56 years old and have 16 more injections to go. Reading all the post below have scared me. 

[Jay68]

Hi rabbit28 - I've had 4 ivs and now 6 injections of herceptin and I find after each injection (for approx 1 week) I feel exactly the same as you describe. My friend, who's had 3 more injections than I, checked with the onc, who told her the effects do build up - and fatigue/nausea and lightheadedness are all typical side effects.... The positive side to all this, of course, is that it destroys the HER2 protein cells which cancer feeds on!

[rabbit28]

I had my 2nd herceptin injection about 10 days ago and am finding I feel quite strange. I can only describe it as feeling of mild lightheadedness and nausea. I've checked my BP and this is OK.  Had this after the first one but it seems more intense this time around. Also seem to have no concentration. Did anyone else feel like this?

[Pam H]

I do wonder why do many specialists are in denial about the side effects of Herceptin. Surely common sense would dictate that so many women aren’t making this up. I’ve had a really bad sore throat since my last dose. No other symptoms that would suggest a cold or the onset of flu. I’m not even going to mention it on my next visit to the oncologist. I might however leave a list of side effects listed by the manufacturer!!!!
I feel so strongly about their denial. It makes me so mad I want to scream. All I hope for is after my last treatment things will settle down.
To Jan15 I can only empathise and hope they manage to get you sorted out.

[jan15]

hi, i have bee having herceptin for years now intravenisly but it was making me feel really washed out so i was put on the sub cut , i have had three lots now and each time i have been floored , aching limbs ,fever ,cold chills very bad fatigue its lasted for abot a week but when i mention if this could be the side effects im told it canot be the herceptin , im seeing my doctor soon as its distrupting my life at the moment .

[Shonagh]

Hi Kim and everyone else on this thread. I've really suffered with terrible joint aches since the start of the Herceptin injections. Initially my oncologist denied that it was anything to do with Herceptin but I went to see him for a review in November and he confessed that several other patients have also had very similar symptoms so he now thinks it is related to Herceptin. To cut a long story short, I was prescribed steroid tablets which were just brilliant - dexamethasone. Within 3 days the pain had gone and I had been suffering for 3 months! I have just had my 14th dose of Herceptin so only 4 to go. I have started to reduce the steroid dose and I'm now taking 0.5mg/day (started on 2mg/day) which only just holds the pain at bay. My gut feeling is that the joint pain won't go until the injections finish so I'm really counting them down. My advice would be don't suffer in silence, I was exhausted from the lack of sleep as my whole body ached everytime I turned over in bed. Good luck and Happy Christmas.