Hello!
I’m new on here today so please forgive me if this topic is already being debated (And if it is, maybe someone could tell me how to link to it!) but I would like to talk about herceptin.
I had six cycles of chemotherapy (finished March 2011) and then radiotherapy for 25 sessions. I am now on about cycle 6 of herceptin (out of 18) and I’m just trying to find out if anyone else is suffering on it? And what your side effects are,however random and non specific.
I have been repeatedly told that there are no side effects and that my symptoms are non related (or as one other lady was told, she was feeling rubbish because she kept dogs and it was nothing to do with herceptin…)
So, would like to put together a list of symptoms just to see how people generally are feeling on this drug.
Thankyou x
Rubbish…there are side effects!
Heart problems can be a SE so thats why you get echos!
I have had 15 out of 18 and…
Terrible muscule and bone aches for 24 - 48 hours after infusion getting better and better until next dose
paper thin nails that break and look like I have bitten them
slow growing hair
runny nose and a bit ‘coldy’ for a few days
Tiredness
I keep going and find exercise combats the aches and the tiredness but will be glad when it is over. My herceptin at home nurse says my SEs are common!
Hi
Here’s what Macmillan say about Herceptin SE’s
Dx
Yes that might well be what the fact sheet says but if you look at the se sheet that actually comes with the drug there are lots more! There is a much more comprehensive list here herceptin.com/safety.html This is a quite dangerous drug which just happens to be a life saver!
Hi and thanks for replying!
I see that a similar thread about herceptin is going on and I found it very useful to see other people’s side effects, all of which are pretty similar to what I’m experiencing.
I am very grateful to be receiving a potentially life saving drug but the oncologists and nurses are making me very cross. Their denial that I’m suffering from a various list of symptoms, coupled with comments like ‘poor old herceptin, it gets blamed for everything’, and ‘we don’t believe it’s the herceptin making you feel unwell, we’ve never heard of those symptoms before, it’s probably because you’re anxious’, are incredibly unhelpful.
You believe what you’re told by a specialist and so her refusal to accept my symptoms was actually quite worrying. I began to think, ‘what’s making me feel so ill then? Am I being a hypochondriac? Is it the cancer coming back?’. And you really don’t need to be dwelling on these worries along with everything else!
Anyways, being proactive has helped and after reading about other people’s similar experiences, I shall go back to her laden with information. I don’t want to cause a fuss about this but I do think that it’s very important that the oncologists are made aware of all these symptoms so they can reassure their patients, not make them feel fifty times worse.
Well, that’s my rant over with. Time for a cuddle with my doggy and then a nipter or two of wine 
xx
Hi there
As the others have said there are those who manage Herceptin with minimal side effects and others who have several. I have had 15 of 18 and have managed so far. However, I do have an allergic type reaction for about a week after each infusion, hay fever symptoms, runny nose, sore throat and achy eyes. My joints ache too but not sure if this is down to the Herceptin or due to the Letrozole I am also on. On the bright side my cardiac output has remained good and that is the biggest concern.
I am back at work full time and managing to cope with the ‘new me’. Good luck with your treatment. Another thread you might want to look at is the one below: -
Re: Herceptin side effects ( quick poll)