I can't agree more about the headaches I'm just glad I'm not the only one. Mine have got progressively worse with each infusion. I've only got one to go & am really hoping they improve rapidly once I've finished
Although they should be a bit better today as the school holidays are over!!
Have a good day everyone
Morning, I have just had no 7 on Thursday and I feel like someone is putting pressure on my chest the fatigue is bad and the pains in my legs are auwful. My arms feel like they are not mine.
The reason why I am posting is because my side effects have been changing
No 6 I was really poorly and the headaches omg I don't want them again!!
I was just wondering if anyone else has experience of this ??
Hope all side effects are go away for all of us.
I had palpitations on herceptin, not initially but from about the last 4 or 5 treatments ( I had 17).
All echos and ecgs stayed normal, so I didnt worry in the end, it was just uncomfortable. Mine were very bad in the 6-8 hours after each dose and then improved.
The runny nose comes as standard, loads of us have this! ( see thread called 'Stamina after herceptin' )
Good luck on persevering through.
I had my 6th Herceptin last week. I agree with previous comments that oncs don't seem to take SEs seriously. My main SE is palpitations, which are worst in the first week together with breathlessness. Have had 2 echos and a 24hour ecg but all show everything is fine - so I have to believe them, I suppose, even though it feels scary to me.
Other SEs I get include: immediate fatigue, strange feeling inside nose, tight chest, soles of feet bright red, night sweats, hot flushes, runny nose, putting on weight.
Anyway, the latest onc who I saw last week gave me food for thought. I told him that I was still concerned about palpitations and H, despite everyone telling me it was fine - he said that as long as I had had 9 weeks of treatment, there was evidence to show that this is effective. The reason we receive treatment for a year in the UK is because our trials were done for a year - and were effective. There is currently a 6 month being done in the UK, as I understand this is the normal length in Europe. So the ball is in my court - I can stop if I want - what a decision.
My results have been improving the further away from chemo I get, I had FEC and the Epirubicin can affect the heart too, so I'm lucky that those side-effects are wearing off and the Herceptin doesn't seem to be affecting my heart. Another worry off the list.
Thank you CM for your reply. I was worried that herceptin would be stopped after 1 or 2 if my results were low. I have opted for the trial so will find out on my 1st whether it will be six months or twelve.
9lbs is good, well done.
I am now back at the gym three times a week and sticking religiously to Slimming World, so am hoping that over the next couple of months it starts to shift. I don't mind if its slow, just as long as it starts to go in the right direction.
I put on a stone and a half in total through treatment. Started healthy eating in earnest in January and have so far lost 9 lbs. Still a long way to go but it feels more possible now.
Just wanted to say well done on getting to the end of your Herceptin. I am due to have my last one next week, and its good to hear that you feel better now that you have finished.
I haven't had many side effects, but am sick of being told by my onc etc that there are no side effects, when there clearly are. Granted they are not as bad as chemo but it really annoys me that the medical professions dimiss them in relation to Herceptin.
I am looking forward to feeling less bloated and hopefully to losing some of the stone in weight that I have put on since about number 12/13.
Hi all. I had my last of 18 Herceptin in Dec and ad a follow up echo on Monday. I was talking to the tech and she said that the ef is just an number and in the case of Herceptin they are not too concerned about the number in isolation, particularly if your pulse is a bit raised. A fast pulse means there is less blood in the heart and so it needs less force to push it out so your ef is lower. ( and that explains why you can different ef's on the same day)
What she did say is what she is looking for s a lower ef coupled with a thinning of the walls of one of the heart chambers. This is what they are concerned about in relation to Herceptin. That is the sign that damage is being done.
Just wanted to say how much better I feel since finishing Herceptin. It's clear that my side effects were not all in my head after all. Of course I would have it again in a flash if I needed it, but it isn't side effect free and your are on it a long time at the mo. For me it def got worse from number 10 on.
My onc said today that a squitty bum is a common SE of Herceptin (seems to be getting worse as the course continues) but it's manageable for me, and that the results of MUGA scans have a 15% margin of error, so 53 (think that was my first value) is fine.
One way you can affect the scans is not to relax so much that the machine buzzes at you, as it does whenever I have one after I've started to chill and relax on the bed. They have to keep coming in to talk to me because my heart rate drops - perfectly normally for me - so much that the scan doesn't work properly.
I'm due to start herceptin 22nd Feb. Just had the results of muga scan and it was 53. I was told cut off point was 50. Its strange how different hospitals say what percentage the cut off point is.
Hi pumpkin just trolling the site when I saw your post, I am on 'H' too just had no 14 and suffered with tummy, had it throughout chemo then eased off when done so had 2 wle and rads then started 'H' July and it came back! Asked gp 4 times said it's ibs and so did onc. Had rotten time and got so I was only pain free for a few days before each treatment! It was rubbish then got so fed up I mentioned it to chemo nurse (doh!) she said it sounded like a reaction as I have Piriton along with steroids due to having a reaction on first one, suggested taking Piriton for 48 hrs after treatment and it is like someone turned the volume down! I still have a bit of a tum thing but it's now much easier to cope with and gone after a few days! I really felt like a hyperchondriac till now but silly thing is I find out when 4 left to go! Have a word with yours it may be something similar? Good luck Em x
thanks for advice is much appreciated. Is good to know meds help. I not experiencing any tummy pain so can't help you out sorry. Hope you get it sorted on Thursday.'
Good luck with echo scan. take care. Xx
Hi all, i meant to ask in my last post if any of you get abdominal tenderness from herceptin. I've had it pretty much since my treatment started in april but thought it was the chemo, but now that's stopped it's still there. I also take zometa so it could be that, abdominal pain is a listed side effect from both but just wanted to know if anyone else has had it?
also having spells where my heart races for about twenty minutes and i feel dizzy and nauseus, have reported this and having echo on monday to check it out, but all the symptoms i have also fit the profile for anxiety, again another possible side effect from both treatments, anyone else have this?
any responses would be much appreciated.
Seeing onc on thurs so will discuss with her.
Hi Silverjill, just saw your post and wanted to let you know that i sometimes get a bit breathless and wheezy with herceptin, i get steroids and piritin before my infusions now as i was having resctions to it, seems to help. Like the others say if your having any problems it's very important to let them know straight away.
Hi thanks for your advice, I have been told that when no 3 infusion happens I have to have steroids and see how that goes. Also told to go to GP and get an inhaler !
Breathlessness is no way as bad as it was in the first week.
Thanks again xx
I would not want to alarm you, however I would suggest that any breathlessness should be reported to your GP and your bcn for advice, particularly since you are on Herceptin. At least that way you can get cheked out and discount any Herceptin related issue. Take care. J
Hello can anyone please advise?
I had my second dose last week and an hour after became very brethless and has been like this every day it hurts to breath a little. I have read booklet but just wondered if anyone else has had the same and can advise xxx
i due my second on 28th too. i have very runny nose most days, and the headaches are on and off all the time, but this has been happening while on the chemo road so i hope it is the chemo still in my system that is causing it.
Hope you feel better soon x
Suffered with a really bad headache today which made me vomit and so went and laid down in bed all day woke up at 3.30, when I did manage to get out of bed which was not easy, I felt like I was spinning out and my nose was dripping, my sinuses were blocked and I was blowing my nose all the time, then it just went away so its not a cold or flu I feel this is herceptin I'm due for my next IV on the 28th dec. Up until today I haven't been that bad on herceptin but today was just awful, anybody else suffer with these symptoms???
love and light
hi my herceptin finished in oct instead of jan because of my hear , i had three more to go was a bit worried, but my oncologist told me that they are debating whether women only need to have herceptin for six months instead of one year, but i do live in south wales, and i surpose its different everywhere. i had sixteen anyway with no side afects apart from runny nose, and a couple of broken nails, but i did have my infusions at home over two hours and i foubd it a lot better.
I have had 17 and finished as number 18 due next week and it always makes me feel spaced out for a few days. Onc said it would not make any difference as some do 17 and others 18 xx
Yes, my side effects of palpitations seem worse when herceptin was given over an hour, so i make sure i have it over 1.5 hrs, too, but the last 2 doses have been worse for some reason, even when given more slowly, i still got nasty palp's.
im not due to see my onc till mid january
I am not sure if the protocol has changed, but I do know that in my area it depends on the onc. Most do 18 but 2 do 17. I know when I got a new nurse they always checked.
I know two people who got to 17 and agreed for some reason not to have the last one.
I didnt have sickness, but I did feel really tired during and after the infusion. I didnt have piriton either. It always amazed me at how shocked the nurses were when I described the side effects i did have. They said i was def an exception. I refused to have my infusion over 30 mins as my side effects were much worse. I always had mine over 1.5hrs with plenty of flush before and after. This did help, especially for the last 4, where I had much fewer side effects.
Crumbs I only meant to write a sentence or two...
Hello Jo C
Ive also just found out im only having 17 herceptins, when I was expecting 18 initially. I didnt press my consultant on this, i just assumed i'd got it wrong, but maybe protocol's changed, i dont know. Im sure one dose wont make too much difference.
The sleepiness i feel both during and after treatment is caused by the piriton I am given, my eyes get so heavy i cant focus on my book so i always end up listening to my mp3 player while hooked up to herceptin.
Hope this helps.
Does anyone else get nauseous the day after Herceptin? I've just had my 8th and the last couple of times have felt very nauseous and headachy the next day. I also find it makes me very sleepy straight after dosing. I've also been told I am having 17 but it seems 18 is standard so am I the only one on 17?
I had my last of 18 doses of herceptin last week. For those with thin hair on their head I will let you know if mine comes back more thickly now, as it hasn't been great so far. I dont see the onc until feb now. It seems weird not to have that three weekly contact with the nurses,but I won't miss playing find a vein.
Mazzalou - You made me laugh with 'the hairs on my legs are alarmingly lush!' My friends sister is going through breast cancer although she's a year ahead of me and she made me laugh when she said "God must be a man cause the only hair thats growing back with some vengence is the pubic hair and not even all over just the outside area ie bikini line". Seriously tho she was right it is just the bikini line on me and my legs look like I've been putting baby bio on em!!
Herceptin SE dont think there are too many for me at the moment very rarely I get heart palpitations and sometimes I get a niggly cough and my breathing can feel heavy, my muga scans come back fine which is a godsend as I am going to be on herceptin forever as I have secondaries.
love and light to all
Thought I would add to the discussion as I had my 3rd MUGA scan yesterday and have my 6th herceptin next Tuesday - don't the 3-week cycles come round quickly? My hospital is very hot on giving MUGA scans thankfully. I finished my 15 radiotherapy treatments last Thursday. My veins packed up after being on FEC so now I have a portacath because I am on herceptin every 3 weeks and it certainly makes life a lot easier, although they can't use it for the MUGA scan injections which is a pain - in more ways than one!!
My 1st MUGA reading before I started herceptin was 87, the 2nd was 80 after starting it and 77 yesterday so falling, but I have been told that they are very high readings - something to be thankful for! I am seeing my oncology nurse on Friday so will see what she has to say about my readings.
I don't seem to be experiencing any side-effects to the herceptin. I also had 3 FEC then 3 'dreaded docetaxels' and only now am I beginning to shake off the side effects of aching limbs caused by the tax. My finger nails are beginning to come through pink again, but I still have tingly fingertips and feet as well as swollen ankles by the end of the day. I had my last tax at the end of September and still no sign of eyelashes or eyebrows, although the hairs on my legs are alarmingly lush! Is there no justice in this world? However, much as it goes against my habit of my lifetime I am refusing to shave my legs as it is my indicator that my body is beginning to recover from being subjected to 'chemical warfare'!
I am not on tamoxifen so the only treatment I am now on is herceptin.
So for me, so far so good as far as the herceptin is concerned, and hoping that it stays that way too!
Ive just had my 13 th dose of herceptin, and apart from runny nose ive been generally ok, except for the last 2 doses where ive had awful palpitations starting about an hour after i get home and lasting for up to 8 hours, making me feel weak and exhausted the next day.
All my echo's so far have been ok.
New to all this, but really interested to see how others are getting on with Herceptin. I was beginning to think I was turning into a mad, neurotic woman.
Its a bit disconcerting to be told there are minimal side effects when you feel crap.
I have now had 4/17 doses of herceptin but the first 3 were given with Taxotere so it was hard to know what SEs were due to what.
I am sitting here now, with swollen ankles, watch won't fit, just about able to get up the stairs due to pain and breathlessness. I am now keeping an eye on my lung function at home as this lovely stuff can cause asthma(in another life, pre Ca I was a respiratory nurse)
Like some of the others on this thread I have digestive problems and can't predict diarrhoea/constipation from one minute to the next. The reflux seems to have settled now I have finished the chemo and I think was related to the steroids.
Apart from that is anyone else having problems with their skin and eyes? I am slathering on moisturiser but still feel like a prune and my eyes are either swollen or really dry and itchy.
By the way I am 48, now menopausal and would like to have my life back.
Having my first of 18 on 6th dec with mixed feelings. Hope the side effects are small everyone is different I find it weird that we are told very little side effects and yet when I read the posts it is very different ! I know we are all different so here is the silver lining it can't be as bad as chemo 😉 xx
I had nose bleeds too.
Two more herceptin doses to go ( hopefully) and had echo, heart function dropped from a consistent 65% all year to 60%. 55% is the cut off I know, but it threw me a bit when it has been the same all year. Tech reassured me that it could be just be a blip and wont affect treatment, but it has made me more aware of my heart and am on the look out for other symptoms.
Good luck everyone.
Have had first herceptin two weeks ago, and many nosebleeds since. Some aching joints, some upset stomach.
Consultant told me that herceptin doesn't cause nosebleeds. It's on the manufacturer's leaflet as causing nosebleeds. Hmm.
I was on the same chemo regime as yourself and experienced weirdness with my toenails, I got ridges and yes they did turn black, I got a tip to soak my feet in epsom salts it seemed to keep them hanging on in there. Mine are growing I can tell because I have a ridge like a ring on a tree for every chemo and these ridges are slowly disappearing. You could go to your Dr and get something for the infection on your toenail. Hair growth does seem slow except for the places you dont want hair to grow ie the pubic area and legs it can grow quite fast in those areas which is so not needed!!!!! and ditto I can join you with the vein collapsing, mine are saying no more of the needles.
Sending love and light
I am on Herceptin number 10 (following 3 x FEC, 3 x Docetaxol, mastectomy and 20 Radiotherapy sessions.
My side effects are mainly aching joints which are ok when i am up and about, but really painful when getting off settees etc.
One i would like to put to the forum:
I lost 8 fingernails (or part of) as a result of Docetaxol. That was a couple of months ago. I now find that one of my toenails is going black, looks infected at the side and is EXTREMELY painful! I can't even bear the quilt to be on it in bed so have to sleep with my toe stuck out!
I'm presuming this is because of the chemo, but wondered if anyone else had experienced anything similar. I think i'll have to visit a chiropodist but can't bear the thought of someone touching it.
Interesting to read about Herceptin slowing hair growth as my hair always grew VERY quickly and i've been surprised as to how slow it is coming back.
Also my veins are all collapsing and i have nice train tracks down my arm!
...mmm I quite understand where you are coming from SarahLouise as with the combo of Herceptin, Tamoxifen and chemopause its really hard to know what is causing what! I ache sooooo much and even my fingers and toes hurt! I am a very active awkward cuss and grit my teeth and keep going but its at night its worst when at 3am the dull aches and pains seem intolerable!
I hope that when i finish in late Dec I will eventually be able to find out which was the H and which is the T and which is just caused by being poisoned half to death!
I am a very upbeat type but get quite tearful over it all at times....I want to feel how i did before all this kicked off....
I've been on Herceptin now since the start of all of this back in Feb this year, I was dx with primary and secondarys at the same time. I've had at least 9 or 10 herceptins now and have been told I will probably be on it for the rest of my life or for as long as it works, so here hoping its working eh!. Had chemo first with herceptin, then straight into my surgery mx with lymph node clearance, and now 6 weeks after surgery continuing with herceptin and tamoxifen. It is hard to judge what is giving you the SE, could be the aftermath of chemo, or the tamoxifen. Mainly been having these symptoms:
Aching muscles in legs, arms, hands particularly thumbs
headaches (seem to of improved now I'm on tamoxifen! could of been hormonal headaches anyway)
confused brain, foggy, emotional weepy
cough and flu like symptoms for at least 1 or 2 days per cycle
hot flushes (chemopause and now on tamoxifen so could be this and not the herceptin)
Love and light
I agree with you that Oncologists should not dust our symtoms under the carpet. Have heard Christies hospital in manchester are doing research into post chemo and herceptin muscle/joint pain. I ache all the time especially my feet and knees. Will look into this and post if I find any info.
The NHS predict tool has been updated to show the percentage increase on 5 and 10 year survival rates, using herceptin as an adjuvant treatment. My stats show an additional benefit of 6.5%- I am really happy with that.
Glad you have found the thread reassuring. I suffered with panic attacks on Fec, non on Tax, but occasionally again on Herceptin. I can get very angry, but put that down to chemo pause. I definatley sympathise with with the just not feeling well part of it. This has gotten worse the longer I have been on herceptin. I have cycle 16 on Monday and am Really looking forward to getting to 18.
While I know we are lucky to have it ( and cross my fingers it is working )and it is much easier than chemo, onc's should not dismiss the side effects and I hope women keep telling them of the problems they experience.
Keep on keeping on
P.s. has anybody heard any new stats abouts it effectiveness - I thought some were due out but my reg hadn't heard anything at my last app.
I'm new on here but funnily enough, I started a thread on herceptin as I was experiencing symptoms that I was told 'are nothing to do with herceptin'.
So it's been quite reassuring to see that some of you ladies are experiencing the same things.
I finished my chemo in March and radiotherapy in May and am just on herceptin at the moment(cycle 6ish of 18)
My symptoms are;
Pains in ribs, joints (esp ankles, neck and knees),muscles
Just feeling unwell (but not able to describe it really)
And an unhappy stomach!
These seem to be quite common symptoms,whatever site you look at but I was wondering if anyone else was suffering with any of the above symptoms or any 'mental'/emotional issues as well?
I seem quite confused, unable to make decisions,angry and generally a bit odd at times! I have definitely felt more like this since being on the drug.
I know this could be symptomatic of what one is going through generally but it doesn't quite feel like that to me.....
Maybe someone could help as after going through this over the last 18 months, I'm feeling a little more worried now than I was at the beginning. Especially when you're told it's nothing to do with treatment.
I would be very interested to know whether anyone else was having emotional/brain foggy issues too.
Am new to this site but thought I would let you know about my experiance. I have had chemo and am now on herceptin. I am on my 16th cycle of herceptin and don't seem to have any side effects. I have secondery breast cancer and am stable at the moment. I am told I will stay on it while it appears that it is helping me.
Has anyone tried chemo sensitivity testing? Am thinking of going down this route.
Hugs to all who are going through what I am. Xxx
5 H's to go just putting up and shutting up with it all taking regular brufen and paracetemaol. Read BBC Archive articles re Herceptin and listened to old Womans hour special on BBC I player. Not going to grumble again when you read how many other women who are HER -2 + have to fight to get the drug and many have died as thier PCT's would not pay for it.
Have decided Chocolate red wine is the answer pamper yourselves, there will be a tomorrow to diet!!!!!!!!
mine was 55% at the benchmark scan and was 66%+ on my last one. I have 5 left to do so will finish in Dec too. I have lots of SE but nothing serious. aches & pains sniffles & sneezes and waves of fatigue as I am having right now. this morning I was full of energy-where's it all gone?
I have December in my sights, hopefully the hair will get a move on and nails will improve.