Forum Discussion

Blossom1961's avatar
7 years ago

All in my head

Onco says Herceptin does not cause side effects even though the manufacturers of herceptin says it can. So, the peripheral neuropathy, sore throat, itchy rash, ridged and cracked nails, breathlessness and insomnia are all shrugged off by the Onco because Herceptin couldn’t possibly cause them. Each new round of herceptin adds another dimension. I wonder what my head will dream up of adding next time? Next  ECG test in a few weeks so hopefully that is still behaving. It is the only side effect my onco acknowledges may occur. Admittedly, some of these side effects only occur in 10% of those who choose to partake of this drug. Oh well, only five months to go.

46 Replies

  • Oh @Blossom1961 your onc needs to learn to google!  

    https://www.drugs.com/sfx/herceptin-side-effects.html Didn’t take me long and I note I have the tiredness after treatment so tired today(treatment was yesterday) I’m itchy today, pain in hip and knee (herceptin or armidex who knows) I occasionally have the metallic taste, stuffy nose is me really no surprises 

    if your gp is sympathetic use her instead of the onc
  • I think the thing is that specialists are trained to treat their little piece of the pie, whereas GPs take in the bigger picture. Some specialists are better than others of course. I dislike feeling 'handled' and don't ever feel like that with my GP, but sometimes I do with specialists. I get that you have to be careful delivering bad news, and difficult information in complex scenarios. I also understand that some patients will manifest a side effect from worry alone. It must be challenging to know which patients can handle which information. It would be best to know your patients better I guess. But how can you do that in the sometimes incredibly brief slots you get with the stressed and worried people who come to see you? The best specialists are the intuitive ones who are good with people. Sometimes people skills do not go hand in hand with medical brilliance...

    Arrogance is not remotely helpful in these situations and it is most arrogant indeed to dismiss your symptoms without taking note and enquiring, and then trying to alleviate them. You simply can't be the only person in the world who has reacted like this to Herceptin! I wonder if your onc ever researches if anyone else has had them? Do they ever take note? Or so full of their self worth and simply convinced of being right? Hmmm, you could always seek a second opinion...

    Hope you feel better soon. K xox
  • It's a long haul with remnants from earlier treatment lingering.
    Counting down to the last treatment gives you something to look forward to
    Take care 
  • It's very aggravating when a medical practitioner shrugs off side effects but the problem is that some side effects are rate and he/she possibly has no knowledge of them. I had peripheral neuropathy from Taxol, it's not rare and while mine improved while on Herceptin, pn is a cussed customer and variable. Cracked and ridged nails are also common from most chemo regimes. Taxol side effects can take a dismally long time to go away for a minority, and that may lead to  a rather unprofessional nonchalance. An itchy rash and breathlessness deserve to be looked into however. Agree with @kmakm to see if your GP
    can help. Best wishes. 
  • Hi K, My GP is the one who found the Herceptin S.E.’s in the Australian Medical Journal. She is fantastic. She only moved into the clinic in February but after one visit I decided she was going to be my regular doctor even though she is only fifteen. Well, maybe a bit older, but not much. I just feel the lack of honesty and transparency with the specialists is off putting. Just ranting. I do that well and it is nice to be able to do something well. LOL
  • What a bugger @Blossom1961, I'm so sorry. Can you work with your GP on this? K xox