HER2 low treatment

[kiwi67]

I have been on Ibrance and Fulvestrant for 3 cycles. Prior to my mbc dx I was an Anastrozole for 15 months. My mbc is HER2 low and from reading I've been doing I'm wondering if an anti-HER treatment would be reasonable. I am going to ask my onc in 2 weeks time when I see her but thought I would get as much info as I need. I understand HER2 low is a relatively new sub-type, and I have not found it easy to obtain info on lines of treatment.

[Andersl]

Hi there

It's good that you're researching about your condition.

Yes, do ask the question or questions or you'll always wonder, 'what if.'

Give him/her the context first. So they know you have some knowledge of the subject then directly ask "could I do better being treated with drugs that target HER2 ?" (If no why?)

Drugs approved vary from country to country. Im in the UK and I've been treated with HER2 drugs... Kadcyla (18 months) and now Enhurtu 1 cycle).

Looking forwardto an update as i'd be interested to know the answers you're given.

All the best x

[kiwi67 in reply to Andersl]

Thank you for replying. New Zealand has Kadcyla funded but not Enhertu, although its available. I'm waiting for my first CT following beginning treatment in about 3 weeks. I'll let you know what answers I get from my onc.

[Pbsoup]

is Ibrance working? If so the usual protocol is to stay on as long as it’s working. You may get several years. Which is not uncommon. And for most women it’s pretty easy to tolerate.

There are a few drugs being used for HER low. Enhertu is the main one. It’s an IV targeted chemo that seems to be very very effective —but does come with side effects. I am also her2 low but my doctor and I agreed to leave it a bit longer before moving to enhertu due to side effects. My hope is in the meantime other treatments go in trials so I can try that.

On the other hand lots of women say Enhertu isn’t that bad…

Wishing you the best!!

[kiwi67]

Thank you for your reply. I'm waiting to have a CT in 3 weeks, following my first 3 months of treatment. After a rocky start including Covid 5 days after starting treatment, I seem to be improving in my tolerance of the Ibrance and Fulvestrant. In New Zealand Enhertu isn't funded, so I'm hoping for a good response to the current treatment.

[Trissh]

Does anyone reading this know the threshold for HER low? I am .5 and of course that is considered HER-

[13plus in reply to Trissh]

I think it's 1

[kiwi67]

bcrf.org/blog/her2-low-brea... this is a website I have gone to for more information. It may help.

[13plus in reply to kiwi67]

Thanks for sharing this page. Another great explanation and resource that I've now bookmarked

[Trissh]

Thanks! Very helpful!

[Widdershins3]

Well, for starters, a low HER may make you eligible for Enhertu. It's the new miracle drug that gave me a year I never expected to have. As soon as I started to take it, my blood test cancer levels just plummeted!

[Hopeful4Cure in reply to Widdershins3]

And how are you doing now? Are you still on it and are your markers in the norm? After my 1st cycle, they came down a bit both CA and 15.3. We'll see secon week of Aug when i get my blood test again. Hope you are still on it and doing well.

[13plus]

Hi, I really recomend for you to watch this excellent video someone else on here shared recently in another thread. I think of myself as being fairly well informed about different treatment options but I have never found anything as informative as this here for explaining how they choose which drug to give next. It is excellent!

It will take time to digest, especially if you're new to MBC, so grab a pen and paper. I've actually bookmarked it to go back and take notes for myself.

Most of us with E+ are still given treatments like iBrance as the first line anyway, regardless of being Her2low. The doctor here explains it all very clearly.

youtu.be/Hn3oB0P6Kpo(Not working as expected?)

[kiwi67 in reply to 13plus]

Hi 13plus. I cannot play the Youtube video, it comes up with error. Can you give me the name of the video or the Doctor, I am very interested in seeing the video. Thanks very much for taking the time to reply to my question.

[13plus in reply to kiwi67]

I just updated the link so it should be good now! I had accidently shared it from my own account before

[kiwi67 in reply to 13plus]

Thanks very much for the link, very useful information. I will keep it as a reference video.

[FloridaNYgirl in reply to 13plus]

I'm interested in the video as well, but can't view it here.

[13plus in reply to FloridaNYgirl]

I just updated the link so it should be good now!

[FloridaNYgirl in reply to 13plus]

Thanks 13plus

[Widdershins3]

You may be a candidate for Enhertu. Do ask your doctor, since it was by far the most effective chemo I've ever taken. I'd never heard of LowHER2 either, but it was discovered that Enhertu worked amazingly on people with it, even though it wasn't developed for us. Best of luck.

[Hopeful4Cure]

Yep, me too. 2016 I started on anastrozole and then it was ibrance and fasoldex, then xeloda, then vinorelbin and now enhertu. I would surely ask your doc about it and it would depend on your er/pr +/- and higher or lower, etc. Those of us that are her2low finally have this option with enhertu and for some it works very well. We are all different though too.