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.

Hi Blossom.. Here’s an article I found that may help re relief.Have a look on Cancer.net and the heading: Skin reactions totargeted therapy and Immunotherapy...Drugs that target EGFR.ive read Skin reactions are common in drugs that are DNAmonoclonal antibodies.. I don’t understand the chemistry but thesection on how the Skin reactions should be managed may help. The least they could do is refer you to a dermatologist who is familiar with the effects of Herceptin on the skin.Its so thumbs down for some of these oncs! All you can do is self advocate for best care. Take someone with you so they dont abuse your self evident symptoms. The dermatologist needs to know about Herceptin drug reactions to identify the rash from other causes. Sad to say, sometimes straight talk to get proper referral is needed.good luck... Frightening that they may be administering a drug and not know its side effects! xx.

@Blossom1961 headaches are the pits. Especially imaginary ones that aren't caused by what's causing them. Awkward non hugs for you MXX

It's so helpful when we're told we don't know our own body as well as a stranger we see occasionally does... :# #FFS

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

Hang in there @Blossum1961 Hope the headache starts to diminish soon. Eye on the prize lovely Big hugs from North Queensland. xox

All in my head | BCNA Online Network

46 Replies

EAA
Member
6 years ago
Dear Blossom We'll pick you up to help you keep going.. the finishing line is in sight.. we,re all here with you.
I collapsed near the end of chemo with neutropenia.. my sister in law helped pick me up when I wanted to give up.
Rest more if you can..you are nearly at the end of the race... xoxo.The. Chalice of poison is the healing cure..
At the end, all will be well.....celebration..
kmakm
Member
6 years ago
Hang in there Blossom Dearie, hang in there. K xox
Blossom1961
Member
6 years ago
Headache for the past three weeks, straight after my Herceptin. It started easing a little but the herceptin on Tuesday set it off again. The Onco nurses tell me it is common with Herceptin. Sigh. Only two more to go. Pain has increased in my wrist which is now swollen. GP checked it out and believes it is caused by the Herceptin. I should be the case study on what they say you won’t get.😋Only two more, only two more, only two more.............
EAA
Member
6 years ago
Hi Blossom.. Here’s an article I found that may help re relief.
Have a look on Cancer.net and the heading: Skin reactions to
targeted therapy and Immunotherapy...Drugs that target EGFR.
ive read Skin reactions are common in drugs that are DNA
monoclonal antibodies.. I don’t understand the chemistry but the
section on how the Skin reactions should be managed may help.
The least they could do is refer you to a dermatologist who is familiar
with the effects of Herceptin on the skin.
Its so thumbs down for some of these oncs! All you can do is self
advocate for best care. Take someone with you so they dont abuse your self evident symptoms. The dermatologist needs to know about
Herceptin drug reactions to identify the rash from other causes.
Sad to say, sometimes straight talk to get proper referral is needed.
good luck... Frightening that they may be administering a drug and not know its side effects! xx.
JulieVT11
Member
6 years ago
@Blossom1961 this is the rash I had about a month ago GP was adament it was the tamoxifen and suggested Clay powder from chemist or health food shop, you can either rub the dry powder on or use it in a bath and it did help. I then saw my Onc and she said no way and that it was a reaction to antibiotics. She said everybody blames everything on tamoxifen 🤔
Blossom1961
Member
6 years ago
Ooh@arpie You have a good imaginary itch too!
arpie
Member
6 years ago
@kezmusc - that looks HORRIBLE!!

@Blossom1961 - this is similar to mine! I never thought it could have anything to do with my BC!!

I've also had a rash on my upper back/shoulder blade area!! Sometimes itchy, sometimes just a 'rough patch' .... it comes & goes. I've had it 12 months now. A lot of the time I forget about it, as I can't see it - then it gets itchy & raises it's head again!
Blossom1961
Member
6 years ago
@kezmusc You have an interesting rash going on in your head too!
kmakm
Member
6 years ago
It's so helpful when we're told we don't know our own body as well as a stranger we see occasionally does... :# #FFS
kezmusc
Member
6 years ago
Hi @Blossom1961,

This is the rash I keep getting on my knees and fore arms. All in my head too apparently. It started on Taxol, I had to take prednisilone the whole way through to keep it under control. It now reappears every month or so (2yrs since taxol nearly). According to onc it's now not from chemo as it has been too long he says. Strange that I never had it before and it reappears in exactly the same spots. I buy dermaid cream from the chemist which is low dose cortisone (1%). It kills it fast but it goes a bit flaky first then disappears until the next time. Appears cancer makes us stupid and totally unaware of what is normal for our bodies before all this crap.

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All in my head

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