Hi has anyone experienced smells that aren’t there whilst on HER2 treatment?
It probably started when I started Phesgo with a nasal drip and then the odd over powering smell of a musky perfume/incense- not unpleasant but strong.
Now I’m on Kadcyla and it’s def stronger the week of treatment but I get it for a few minutes a few times a week. Sometimes I’ll smell the incense smell instead of the actual smell. Like hanging the laundry today, I smelt it rather than the softer?
I was diagnosed stage2a Triple positive. 2 nodes involved, 1.8cm invasive and I guess I’m just panicked that this is an early sign of brain involvement. My next onco is in 3 weeks so I’ll mention it but I’m scared. My logical brain says it’s a side effect of treatment, my fear says it’s spread.
I had some changes to my smell but mainly change in taste and a metallic taste in my mouth, I was having it alongside docetaxel so can’t be sure what was what. I also had issues with a scabby/bleeding nose and nasal drip too. Have you got a specialist nurse you can contact before your next appointment just for reassurance?
Also, there’s a thread on here for HER2+ chat if you wanted to join/ask in there and many more people who can say if they experienced similar! It’s called ‘HER2+ and need some buddies’
I see it’s been a while since you’ve posted, but I just wanted to ask if anyone has connected these phantom smells with changes in medication or diet? I’ve been going through something similar, and I’m trying to figure out if cutting out certain foods might make a difference. Would love to hear if anyone noticed a pattern or found relief in any specific way.
Hi sorry to hear you’ve had similar. I think I’ve figured it out. I think my sense of smell has been damaged by the treatment. Like the early Covid symptoms! So the smells aren’t phantom as such, I just get smells confused. It’s significantly worse when I have a cold or sinus infection on the way. I know I’m smelling something but it doesn’t smell right! Last week I walked past my neighbour varnishing a fence and smelled musky incense. How I tackle it now is to smell something familiar, like my perfume and then try again. Almost like smell training!
I’ve been dealing with the same weird smell thing, mostly like a burning plastic scent no one else notices. I started using essential oils to give my senses something nicer to focus on. I found some comforting blends at https://nothingbutscents.com/ — they’ve been a small help during chemo and the phantom smells episodes. Just having a scent I actually like around me makes it a bit easier.