morning all
I had Her2+++ breast cancer and have about a 20% risk of recurrence according to the predict tool
http://www.predict.nhs.uk/predict_v2.0.html
If I had private healthcare I'd have a selection of drugs to keep me going, Herceptin, Perjeta, Kadcyla.
On the NHS I can have Herceptin and Perjeta but Perjeta is possibly about to be rejected.
insert gold standard care for primary Her2+ breast cancer :
I had EC x 4 and T x 4 and Herceptin x 18
for metastatic or advanced : as I understand it you stay on one until it stops working and move on to the next.
but I'll build a better picture as I research it more and you guys all chip in
this is our group now so bookmark it. we can't have an actual group but this will work.
I'll tag a few people, as I remember who is Her2+ toxophilite is first since you messaged me, ... who else ? Kacang ? although you have the luxury of a slightly different system down under.
| jowoomot
welcome to the gang
Carolyn
xx
Hi Jo,Â
Thank you so much for your reply and help in answering any questions. Â It is very kind of you to offer.Â
Im just so conflicted about having chemo and how to way up whether I should or not. I dont want to loose my hair and it does sound petty of me.Â
Thank you again for all your help Jo.Â
Mini x
hi
I don't blame you not wanting to lose your hair, I've really struggled since mine has been growing back, it's really awkward, people just don't recognise me.
I bumped into a couple in the park the other day and the girl had seen me several times but the boy hadn't, whilst me and the girl struck up a conversation the boy stood back and stared into the middle distance, as boys sometimes do, and then suddenly he looked straight at me and said **** I didn't recognise you !
I quite like my post chemo curls but that in itself isn't helping because I keep changing the style
However whilst I was going through chemo I did have a nice wig, it was really quite convincing and I got used to wearing it and if I wasn't going anywhere I had some bobble hats and beanies and a nice M&S bucket sun hat.
They do recommend chemotherapy for Her2+ breast cancers and although I'm all for giving people the options, you need to take a long term view.
There is a Predict tool which allows you to input your details and then gives you statistics about how much benefit you'll get from chemo.
I had a 50-50 chance at 10 year survival and chemo with Herceptin improved that to over 70, we're not talking marginal benefits here.
http://www.predict.nhs.uk/predict_v2.0.html
... wigs, I can send links
Carolyn
x
real life success stories to remind you that people do survive breast cancer
https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457
Dr Peter Harvey
https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
AND ...
we did it
http://breastcancernow.org/news-and-blogs/news/lifeline-drug-kadcyla-approved-for-routine-use-on-nhs
NHS England and The National Institute for Health and Care Excellence (NICE) has today announced that secondary breast cancer drug trastuzumab emtansine (Kadcyla, Roche Products) is to be made available for routine use on the NHS, in new (final) guidance following its reappraisal.
yay
xxx
Carolyn
real life success stories to remind you that people do survive breast cancer
https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457
Dr Peter Harvey
https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Well done to everyone who campaigned for this drug x
Well done all you who fought this. Fantastic news
This is just an inconvenient phase that I will get through.
Random internet surfing ...
I just came across info about the SOPHIA trial in the USA. It's a big phase III trial looking at whether a new (not yet approved) drug called margetuximab is superior to Herceptin for metastatic BC. I've not heard of this drug before and am posting to let everyone know there are still new options coming along.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007