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

Blossom1961
Member
7 years ago
@Sarnicad I didn’t know that. Thank you
Sarnicad
Member
7 years ago
@Blossom1961 because the first one was a heavier dose. They do a loading dose at the beginning and then your final dose is smaller so you get the right amount over the whole journey, at least that is what they told me
Blossom1961
Member
7 years ago
@Sarnicad Why is one dose a baby dose?
Sarnicad
Member
7 years ago
Oh @Blossom1961 it is shit but the good news is it is only two more and one of those is a baby dose. Hang in there it will be worth it
kitkatb
Member
7 years ago
Hang in there @Blossum1961 Hope the headache starts to diminish soon. Eye on the prize lovely Big hugs from North Queensland. xox
Blossom1961
Member
7 years ago
@Zoffiel I have had a real hug from you so I know you can do them well. xxx
Zoffiel
Member
7 years ago
@Blossom1961 headaches are the pits. Especially imaginary ones that aren't caused by what's causing them. Awkward non hugs for you MXX
Blossom1961
Member
7 years ago
@primek My Onco offered to cut it short but then reneged on the offer when I was keen. I have come down with a cold so that is making me a sook. I asked hubby to go buy my nose a new washer but he didn’t take me seriously 😛 Actually the headache is the one thing getting me down. I am just not functioning well.
primek
Member
7 years ago
https://www.ascopost.com/issues/may-25-2018/adjuvant-trastuzumab-6-months-is-noninferior-to-12-months/
primek
Member
7 years ago
You know...they believe 6 months of herceptin is enough now...but until clinical trials are finished I guess they will continue. So ...if it really is becoming unbearable you could vobsider stopping 2 short in consultation with your oncologist to be sure.

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All in my head

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