Forum Discussion

DebsSA's avatar
DebsSA
Member
6 years ago

Herceptin Side Effects

Hi I am her2+. I’ve had 6rounds of THC, a lumpectomy and sentinel node removal followed by 20 days radiotherapy. When the chemo finished I had a 6 week break from Herceptin as my heart was under strain. I have been put on beta blockers and blood pressure tablets and resumed Herceptin 5 weeks ago. I started radiotherapy at the same time.
During the last 3 weeks of the 6 week break I got my taste back to normal. It was assumed the chemo had altered it. Unfortunately as soon as I started the Herceptin again my taste has been effected and I have mild nausea and upset stomach. I am gutted as I have 7 more rounds to go. I mentioned it before my second infusion but was advised taste changes aren’t a side effect of Herceptin. I am going back next week and just wondered if anyone else experienced this? 
Everyone seems to expect me to be thrilled it’s all over with chemo and radiotherapy but I feel more upset now than I have done before. I also feel no one will let me talk about it as it’s not as bad as it was or I’m lucky it could be worse etc.
Thanks Deb


herceptin
side-effects
  • EAA's avatar
    EAA
    Member
    6 years ago
    Hi Kymmyb
    wishing you gentle steps on your journey to recovery.
    xx
  • Kymmyb's avatar
    Kymmyb
    Member
    6 years ago
    Thanks for the tips everyone. I am about to start herceptin treatment in 5 days time combined with chemo. It makes it a little easier to know I am not the only one and to read your stories. 
  • EAA's avatar
    EAA
    Member
    6 years ago
    Hi Deb... I didn’t Have Herceptin when I had Chemo, but 
    in our chemo unit we were all encouraged to bring a plain sandwich, no acids and drink at least a litre of water while the infusions were drip drip dripping. I also was put onto daily nexium that helped 
    when I was into giving thanks to the chooks every day when all i
    coukd manage was a poached egg  I was also told that a protein diet is best during chemo to help 
    repair cells  but to avoid fats as the liver metabolised my chemo drugs. 
  • Cassina's avatar
    Cassina
    Member
    6 years ago
    I also find the crystallized ginger great for nausea, however realised it is high in sugar ( sugar coated) as was the ginger cordial I was drinking, As I am now fighting Diabetes this needs re thinking! No real side effects from Herceptin but certainly from tamoxifen, and not helped by Metformin! ( mainly nausea and flatulance and gut pains!) I just wish the Drs would listen more and acknowledge that the side effects are real! 
  • DebsSA's avatar
    DebsSA
    Member
    6 years ago
    Thanks for the tips. I feel better about it all today and will start looking into findings that work for me. X

  • Beryl_C_'s avatar
    Beryl_C_
    Member
    6 years ago
    Hi @DebsSA  - tomorrow I have Herceptin infusion 108 and I also take Exemestane (oestrogen blocker). I have learned to accept that my body has some weird side effects, they come and go, such as aches and pains, headaches, irritable eyes, extremely tender feet which make walking a real challenge, and fatigue has become my constant companion. My GP hears me but it comes down to 'take Panadol'. I use Voltaren for my feet but very cautiously, for example, 50mgs the night before an appointment. In the beginning I felt a bit fobbed off or abandoned by my oncologist, but a friend reminded me that their focus is to 'keep you alive' and suggested that I get on with finding my own way to ease the side effects. I used crystalised ginger for bouts of nausea and mint leaves from the garden when I had altered taste. I have found this forum to be the most reliable and informative.
  • Blossom1961's avatar
    Blossom1961
    Member
    6 years ago
    Hi @DebsSA I haven’t had the altered taste with herceptin BUT I have had other side effects from it which the medicos quickly sweep under the carpet and deny. If you look on the herceptin manufacturers web site they state the possible side effects. Fortunately for me my GP has acknowledged them so I didn’t feel totally brushed off. Herceptin ‘rareand unusual’ side effects affect up to 36% of patients. Not sure what is rare and unusual about 36% but my Oncologist is sticking with her “that doesn’t happen”. I actually had her agreeing with me at one point but she reneged by the next appointment. Hang in there. Big hugs

  • DebsSA's avatar
    DebsSA
    Member
    6 years ago
    Thanks for your support. I can’t see the wood for the trees sometimes. I will check my other meds but also start getting my head round the fact that this may just be how it is for another 6 months. X
  • kmakm's avatar
    kmakm
    Member
    6 years ago
    Hi Deb. I felt very low after chemo was finished. People kept expecting me to be so happy and I found it really weird that I wasn't. I came on here to say the same as you have, and many reassured me it was normal. It takes a long time to work through all the mental shit that BC brings, and that timeline does not fit neatly into active treatment segments. It's a very unusual person who hasn't had cancer who gets this. I found my relief and happiness that chemo was done with came on slowly. There was never really an overjoyed moment; more a deep relief and satisfaction that it was done and dusted. And that was months later.

    We all get it here, so jump on to talk about it whenever you need to. This BC crap is a very big mountain to climb. Chemo is only a part of it. Hang in there. Big hug, K xox
  • primek's avatar
    primek
    Member
    6 years ago
    I got very sleepy after the infusion which nobody else seemed to have either and tired for 3 days.

    Radiotherapy can definitely cause issues with your gut if it is close by.

    I don't recall issues with taste from herceptin but after finishing chemo and 2 months on  was on optifast trying to drop all the weight I'd put on during chemo. Everything tasted amazing on 800cals a day.

    I wonder if your other medications could be contributing?

    Just be aware you are exhausted from treatment and this is a set back. You are over halfway now ...there is light at the end of the treatment tunnel..