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Herceptin side effects ( quick poll)
Hi
On another site I found a really useful, but incredibly long thread of side effects from women on herceptin. It makes me laugh when onc's say it has ' no' or 'v mild ' side effects. It is nowhere near as bad as chemo, but in our paranoid world a quick reference of side effects that real women have experiences might be useful for putting peoples minds at rest. Anyway i would love it if people could add on to this list.
Most of these I have not had everytime, but I am on number 12 now and they have def increased as I have had more. They are also made worse by having the infusion quickly. That said I also had tax chemo which I know causes probs , but am on no hormone therapy. Am 39 no periods since chemo 10 months ago- so again chemopause could be to blame for some
Headaches
Bone muscle aches, particularly back, shoulder, wrist, hips, feet. ( bone scan all clear)
Stomach upsets
Sudden onset tiredness
Chills, flu feeling
Brain fog
Bloatedness
Pins and needles, tingling in infusion arm.
Ache in tissue in arm and breast, good side.
Occasional night palpitations ( echo all fine )
Any one similar? Or would like to add more to help others. I find even after 12 it is unpredictable as sometimes I get hardly any and other times feel off for quite a while.
Debx
Hi Midge,
I too have had quite severe side effects from Herceptin, I am only on number 4 of a 12 month course at 3 weekly intervals. My symptoms have caused me to end up in hospital as the pain in my legs was so bad I couldn't walk. However my Oncologist has said it is not related to the Herceptin. My GP however says it is far too coincidental as I had just had my treatment the previous day. My GP is now going to speak to my Onc as she is not happy with my treatment. I am now getting very worried about my next treatment date. I'm hoping it doesn't happen again.
To List my side effects:
Pains and tingling in hands, Fingers, Toes, Feet and legs. ( Unable to walk at worst times )
Tiredness
Weight Gain ( 10lbs in a week )
Bloatedness
Swelling to ankles, wrists, fingers, knees,
Runny Nose
Niggly Cough
Headaches ( never suffered with them before )
Chills especially just after treatment
Weak and brittle nails, soreness to cuticles.
I think this is a very good idea of yours, I hope other Herceptin ladies will contribute.
I am on no other treatment by the way, just Herceptin.
Sharon
I've only had my first one so I'll be watching this thread, but I have to say I experienced no SEs at all so far. Also having rads and haven't had the tiredness lots of people have mentioned either.
I've had 3 so far but at the same time as tax so it's hard to tell which SEs come from which treatment. But I too will be watching this thread with interest.
I am very lucky. I've had 13 so far and the only thing I've had is split/brittle nails and occasional tiredness. Otherwise, I feel very well.
Isobel
Hi Again,
Also forgot to say that after the hair loss of chemo, it started to grow back nicely but for some bizarre reason my hair has stopped growing, including underarms, legs etc.. which isnt a bad thing, but really wanted my hair to thicken up a bit and grow. Hope this dosent last the whole 12 mths.
Just thought I'd add this in case anyone else has noticed this side effect.
Sharon
Hi
I have finished Herceptin and although my hair was growing after chemo the herceptin kept it very thin and slow growing. Also I had a permanently runny nose and watery eyes, and brittle nails. These have all sorted themselves out now
Andie
Hi
I finished my year of Herceptin last week but continue to take Tamoxifen.My side effects were headaches,runny nose,sores inside nostrils,achey fingers and toes and tiredness.
Herceptin also used to split the skin on my thumbs but this wasn't every cycle.
Tracy
x
Hi
I have had 5 out of 18. The worst side effects i am having are extreem pain in my legs. Some mornings when i get up i can hardly walk. I also sometimes get pains in my wrists and fingers. I have a constant runny nose and i cant remember the last time i got more than 2 hours sleep. The hospital say it is nothing to do with the Herceptin and it could be caused by early menopause as i havent had a period since last October which was my first chemo.
I too will be watching this thread with interest.
Shirley
Hi,
My SE's on Herceptin.
Abdominal and leg cramps.
Runny nose.
Funny cough followed by loads of sneezes followed by nose pouring.
Ectopic heart beats but not all the time.
Finished Herceptin 13 months ago.
Cramps are now only occasional.
Still have Ectopics but I think they are easing.
Nose does not run but I still have the cough sneeze etc.
E
Hi
Watery eyes
achy everywhere but not all the time
" groovy" and brittle nails but thought this was still the chemo till now.
not sure what ectopic heartbeat is but, I've noticed when I excersise in the first week ie, swimming today, heart thuds very hard.
no cough
sleep like a log.
Carol
Hi,
I did 18 herceptin and apart from the achey chilly feeling just after it was administered was Ok. To be honest have felt far worse with some of the hormone treatment - but all of us are different i guess.
cheers
Caroline
No se's at all until after I'd had the 14th and then got lower leg cramps and aching. Not sure if it's tendon, muscle or what but for the first few hours each day I have to hobble around. It was quite funny at first but I had my last (18th) H at the beginning of July and it's still like it. Interesting that others have had leg pains.
Wonder exactly what causes it?
Thanks ladies
I hobble like an old lady in the morning and if I sit for along time. I also forgot crusty, bloody nose and my hair is still thin on top.
Debx
Hi Ladies
I'm the same. Very achy legs and sometimes I cant sleep. In fact I cant remember the last time I slept all through the night. I have done 8 out of 9 so far. I'm on the trial. The hand where the herceptin goes in is very stiff in the mornings and it takes a while to loosen up. My legs have got worse as I have had more herceptin. Runny nose as well. Interesting they say no side effects. Are the ladies who are having the side effects menopausal I wonder. I've not had a period since my first chemo in October and am having hot flushes etc now. Never sure if it is menopause or herceptin. Will only know when herceptin finishes.
I'm not on herceptin, but had 6 fec-t chemo. Not suffered achy legs since taxotere finished. Headaches bit more frequent than before but think linked to tiredness as i can bowl along happily then be suddenly exhausted. Breast and arm on bad side ache regularly but good side do sometimes and my fec veins still play up very occasionally. No runny nose problem, brain is a fog a lot though and my memory isnt what it was. I'm on tamocifen though, 37, finished chemo last august. Hope this helps as a non scientific comparator.
Midge, i have heard that another herceptin side effect is excessive internet useage, esp bc related searching, even when you are actually on a family holiday. Have you come across this at all?
Vickie
V - ahem pot calling kettle.....
This mornings excessive Internet usage was due to sitting on the bathroom floor for an hour as my six year old experienced her first bout of holiday runs- yeah! Tmi?
D
Nice. I enjoyed my breakfast just a smidgen more with that picture in my head.
Regarding the question about menopouse could be the cause of these side effects. I am 51 and post menopause (was 46yrs old) before I was diagnosed last year, so in my case none of the se are related to the menopause. Hope that helps you ladies that have both going on.
Sharon
Hi, I've had 3 herceptin. I felt dreadful during and after the last infusion, which they put through in 30 mins. I felt lightheaded, exhausted and achey - legs, arms, shoulders, head. I have the brittle nails but other symptoms I suspect are from tamoxifen. I am planning to ask them to put the next herceptin through more slowly.
Number 2 for me tomorrow, so let's see what happens. I'm hoping joints can tolerate it.
Good luck tomorrow Choccie Muffin
Forgot to mention I have still got bad cording in my arm and after herceptin number 4 I think, I developed mondors cord in my good breast. Not sure if herceptin irritated my veins or I got a swift kick from my 3 yr old. But the chemo nurse did say it could be that the veins get easily irritated after chemo and although herceptin doesn't hurt them, they might react badly to having something forced through them again.
Dx
Hi folks
Good thread and will follow it keenly. I had 10th Herceptin on Tuesday. So far the side effects have been annoying but manageable. I am also on Letrozole so not sure which se's are from what. Side effects I have are: -
runny nose
sore throat
itchy eyes
achy joints
stiff fingers
strange feeling in toes
intermittent lethargy
cording quite bad - remaining from chemo
All in, I cope with this and find it nothing near as bad as chemo. I am back at work full time and enjoying being back in the midst of things. I hope you all cope ok with Herceptin, I feel it is so important to all of us Her2 positive folks. Take care, J.
I've had 4 of 18 Herceptin treatments and am on Tamoxifen as well, plus I had 3x FEC 3x Taxatore and Rads. I have been very fortunate so far as I've not had any side effects other than weight gain and water retention. I've noticed that some people mentioned having their herceptin treatment in 30 minutes. They set mine to run for 1 1/2 hours- not sure if this is related to having fewer side effects but it must be easier on the veins.
I completed 18th herceptin treatment at the end of may
.Throughout I suffered from aching muscle in my upper body, oncologist, acknowledged it was herceptin! probably because as we worked together for 6 years!
I still have episodes where my muscles in my back and neck are sore to touch,
Runny nose still
Ectopic Heart beats regularly, check myself at work, when I can feel a run, always worse after exercise.
Stiff in the morning and after sitting for too long.
Still some peripheral neuropathy in fingers and toes, ?? taxotere related as I had 4.
Slow growth of nail, now starting to improve.
Poor immune system
Still being seen 3 monthly so feel reassured
Charlie
Ive just had 10 of 18 herceptin and may be brought off for a while due to heart down to 59% it hacks me off that not only do we get cancer but the treatment gives us a hard time as well. Trouble is i feel ok and wouldnt know if it hadnt been for the echo scan. Have another scan on Friday when decision will be made. When i go back on it then i have to have another loading dose.
I also have had cramp and aching muscles didnt realise it was herceptin until onc told me on Wednesday.
Hi
Thanks for adding on to the list.
Hatty sorry u have the extra cconcern about your ef. I am always nervous at my echo and conseQuently my Pulse is always fast. I though 50 was the cut off, mine was 60 on chemo but has gone up to 65 now I have finished. It has been exactly the same every time, so I imagine any drop now would cause concern.
Found out this week that my constant salty tast in mouth could be neuropathy in my Tongue, oh joy.
Take care.
Debx
You're DOWN to 59%? That was my starting figure before I'd even had any FEC! Went down to 53% after FEC, so let's see whether they will keep me on it...
Bum.
the concern was because when i started i was 73% i dropped to 63%| and now to 59% the concern is if it drops to 50% which is the cut off, please dont let me scare you. It just means i will have a rest and then go back on it.
Hi All
I am on my 12th herceptin and I tend to have bad joint pain following especially in my kness and feet. I also hobble in the moring and after a walk sieze up. I also get chills and flushes am taking Tamoxifen as well, which i started same time as Herceptin. Am now back at work and am having to take the 2 days following Herceptin infusion off as annual leave as I tend to feel worse then.
I am also on the Herceptin trial. Also get sore joint pain in thumbs.
maggie
I was taken off of Herceptin after 9 as my ejection fraction had dropped to 40% - was told I had heart failure. 8 months on, with more drugs, it has gone almost back to normal. Another year of heart drugs and hopefully I can come off of them.