Herceptin Side Effects

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Hello, I am new to the group and I was wondering if anyone was currently receiving Herceptin injections for Her2 positive breast cancer and can tell me what side effects they have experienced please. I will be starting to have them soon alongside Docetaxel and just wondered what to expect? Thank you! 

  • I too have docetaxol and Carboplatin chemo therapies as well as phesgo injections which is two combined targeting injections in the leg for her2 positive tumours.

    my side effects are sore mouth - everything tastes like acid

    sore finger ends - skin is very thin and cracking

    hair loss

    flu like symptoms after treatment and injections to encourage white cell production which you administer yourself 4 days after treatment. You have to inject one daily for five days

    Because I have 2 chemo drugs and two targeted therapy drugs it is difficult to determine which ones are responsible for my side effects - but none of them are totally unbearable and if they cure me then it is a small price to pay

    kind regards and all the best

  • Thanks so much for your reply GloriaJ. I’ve had 3 cycles of EC chemo so far and had a few similar side effects to yours that you listed…like you said, not great but bearable. 
    The chemo nurse mentioned the self injections after Docetaxel and I wasn’t aware of those so can’t say I’m looking forward to that but if it needs to be done then I will just get on and do it!  
    Best of luck with all your treatment and thanks again for the advice xx

  • Hi!

    I had exactly the same concoction as you for my HER2+ breast cancer..I wanted to reply to say that following my op in Jan, the results showed that the chemo cocktail & phesgo had completely destroyed the cancer - wishing you the same x. Now I only have to have herceptin injections (instead of both drugs that make up ‘pheagp’)..

    I did have side effects but I now know (as I don’t have any from just herceptin) that it was the docytaxel & the carbo that caused them … but same as GloriaJ says, looking back they weren’t too awful.  Mainly my appetite was affected & horrible taste - nothing tasted as it should. I did have some bowel issues and about day 3/4 after a dose I would feel just generally rubbish! I had tablets for indigestion, constipation & towards the end of the 6 sessions I did have more nausea - but again I had some tablets.  Everyone is so different but hopefully you won’t be too badly affected.  I did the cold cap for all 6 sessions but my hair did thin right out and I had some nice bald areas I. Front so I shaved it quite short! So much easier x   It’s since grown back quite quickly & thick (I was recommended Faith in Nature Rosemary shampoo which I found good)..

    For my nails I started using Polybalm before and during chemo and they were not affected …only recently (after I stopped using it) did they start to go a bit thin….  Clearly I should have carried on after chemo finished as it’s probably still in my system.

    anyway hope some of that helps….& good luck with your treatment! Xx

  • Hi Teddy24, thanks so much for your detailed response, it’s so helpful to hear your experiences, I know everyone is different but it gives me a good idea.  Thanks also for the hints and tips and product recommendations, that’s really useful. 
    That’s amazing news about you being cancer free…it just shows how good these treatments are and it’s so worth persevering through the side effects, you must be so thrilled! 
    I must admit I am a bit confused about all the different terms and names for things as I’ve never heard of Carboplatin and Phesgo as they haven’t been mentioned to me. I had a lumpectomy last November to remove a 1cm tumour and I had clear margins and clear lymph nodes so I was told I would have 3 cycles of EC, 3 cycles of Docetaxel and 18 herceptin injections over a year. Does Carboplatin always come with Docetaxel and is it Phesgo rather than just herceptin or can you have herceptin in isolation? I have my next appointment with the oncologist soon so I will double check with him…I’ve learnt that plans do change and you have to roll with them as originally I wasn’t  having chemo, just radiotherapy after surgery but that all went out of the window when the tumour changed from a grade 2 to a grade 3! 
    Thanks again for all your help and advice, it is much appreciated xx

  • No problem..I found this site useful so many times!   I think the ‘cocktail’ can be different in every patient.. I didn’t have EC at all but then I had chemo before surgery as my tumour mass was quite large so they wanted to shrink it before operating .. yes you can have herceptin on its own.. I have 18 in total (6 x phesgo with my chemo now I have 12 x herceptin only jabs to go… actually it’s 10 left now yay!).. I have them every 3 weeks and so far no side effects. 
    Yes just make a list of all the questions you have for your oncologist as they usually go out of your head at the time! Yes plans definitely can change in this game but you sound very accepting of this and positive which does help x

    Sending best wishes for the rest of your treatment x feel free to ask anything else!