I’m in a few forums and I keep hearing about Enhertu (herceptin + an attached chemo agent) being the treatment of choice amongst many (in U.S.) with mets.
I have a solitary liver lesion (2-3cm) - but no other signs of mets (not even ‘involved’ LN’s on any of my many scans, so I’m presumably ‘spreading’ through my blood vessels). Has anyone ever been offered the option of Enhertu here in the UK?
Hi Ross,
Enhertu is available for HER2+ patients in the uk on the nhs.
NICE has refused it for low HER + patients, but you can get it privately in the UK. The research I have read looks good.
Either way, as I understand it you need to have the ESR mutation, and have been on at least 1 AI which has failed/stopped working before you can get it. You may also need to be Stage 4 metastatic too, not sure.
Ask your team if it’s suitable for you.
All the best,
Kinden
What’s considered “low” HER2?
Is it the ‘copy number’? (I was told mine was 4. When I asked what’s considered ‘high’, they said a copy number of 6. So does that rule me out?)
Surely there must be a uk arm of an Enhertu trial….somewhere? Royal Marsden? Seems unfair that they can get it in Scotland 1st line for de novo mets BC (or have I got that wrong?)
Wonder how much it’d cost privately?! More google research coming up!
You’re right, it is available in Scotland.
As to cost, I asked my oncologist to find out. My own research showed £1,485 every 3 weeks, but someone else on another chat group says it’s £1,485 for 100ml and she needed 375ml, so I remain in the dark.
I did try to go to the Marsden in October when my mets progressed, but even though I was willing to pay, they rejected me as a private patient! I didn’t even know that that was a thing until then.
Neither did I. But if you’re a uk citizen/ resident that’s entitled to NHS care, we have the right to choose which hospital we go to don’t we? Wouldn’t that be a route in to the Marsden and any research trials that they’re a part of for Enhertu? (I heard it’s in trials to even be considered for non-metastatic breast cancer…through the many forums I’m on).
You could try exploring via make 2nds count trial register How do I Access a Clinical Trial? - Make 2nds Count.
SMC (Scottish Medical Consortium, equivalent of NICE in England) has approved it fairly recently. Which is good for me as I am in Soctland. (NHS Lothian). I was told that my previously primary NC was ER/PR 8 and HER negative.
I have been in the unenviable world of secondary BC since March 2023 when mets were discovered in my liver. Biopsy showed it is now ER/PR 7 and HER 2. My oncologist has Enhertu on a long list of treatment available to me, thank goodness. Because at the moment I have burnt through 2 lines of treatment already - first one was a clinical trial (Fulvestrant and a type of ribociclin that Pfizer is hoping to produce). I had 2 good scans out of it in the 6 months I had been on the trial - first scan showed excellent response with shrinking, the second one was stable. The third one was a small progression so I was immediately taken off the trial and put on Capecitabine.
Sadly I progressed further while on Capecitabine (I only squeezed 4 cycles out of it) - small progression again but progression nonetheless. Paclitaxel was prescribed but I suffered 2 serious allergic reactions, so today was my first cycle of nab Paclitaxel which went smoothly. I will have a CT scan after 9 weeks and if the scan is favourable I have a feeling I may go onto Enhertu. But we’ll see. I am just so extremely grateful it is available in the UK area I live in.
There is a bit more on it here: Enhertu: An open letter from women with HER2-low secondary breast cancer | Breast Cancer Now
Hi, Just about Royal Marsden. I am in their catchment area and they wouldn’t take me on after my secondary diagnosis. Very curt unhelpful letter after my GP applied on my behalf. I was very disappointed as I always thought they would be more caring, sympathetic.
Thanks, I will have a look at that
Hi anotherone1,
I have been in the unenviable mets club since October 2019. Was ER8/PR7 HER2-. Fulvestrant and Ribociclib worked brilliantly for me for 4 years, progression in Sept 23. Now on capecitabine. Also now ER8/PR4 and borderline HER2. First scan on cape was good, but I am pretty certain it has stopped too. Limited options for me after this.
Hi Kindensurprise,
So sorry you have gained this shitty membership. But so glad to hear that ribociclib/fulvestrant combo worked for you for 4 years. Mine only worked for 6 months and that was a clinical trial composed of fulvestrant and a long-numbered tablets courtesy of Pfizer, so I am assuming it was some sort of equivalent of ribociclib (it was certainly one of those CDK inhibitors or whatever they are called). My oncologist said she was concerned at the speed I am progressing but expressed her confidence in myself as I feel absolutely normal, no pain, swelling or any other issues that come with liver mets.
I am so disappointed that Capecitabine didn’t really touch it as I felt so normal while on it, so was quietly confident. Then boom, progression (small one, but still), and my liver function blood-test wise was at a normal level. So, how, how on Earth I have managed to progress is beyond me. I guess the bastard mutates at a lighting speed.
If Enhertu gets approved by NICE soon, would you be a candidate for it? Only CT can show if Cape has been doing its job, so don’t discount this just yet. Easier said than done, I know. Best of luck.
I have finally started the IV chemo, nab Paclitaxel which seems to have been absolutely fine, no issues while being administered and I am still feeling fine 48 hours into it. It’s administered every 3 weeks, so the next one due is on 27th February.
Hi everyone
I spoke to my colleagues in the policy and campaigns team, and they wished to respond on this thread to give an update on the current situation with Enhertu and what we’ve been doing to try and make sure people can access it on the NHS.
Hopefully this answers some of the questions people have asked. Let us know if there’s more you’d like to know.
To start, we’d like to explain who Enhertu is for and also what HER2-low is. Enhertu is a targeted treatment for certain patients with HER2-low secondary breast cancer, which could be life-extending. HER2-low is a new classification for people with low levels of HER2 expression (which is defined by a score of IHC 1+ or IHC2+/ISH-).
It is estimated that around 50% of all breast cancers show low levels of HER2. Enhertu is already available for use on the NHS in Scotland, but disappointingly, Enhertu (trastuzumab deruxtecan) was provisionally rejected for use on the NHS in England last September.
You can find our response to his here: We respond to provisional rejection of secondary breast cancer drug for use on NHS in England | Breast Cancer Now
To help reverse the decision, we have been in direct contact with both NICE and Daiichi Sankyo to encourage them to work together to find a solution, and make the drug available for patients with HER-low secondary breast cancer. We have also responded to the NICE consultation, including comments from women with HER2-low secondary breast cancer, setting out what access to the drug would mean for them.
We also encouraged women who could potentially benefit from the drug to respond to NICE’s consultation directly.
In December, NICE announced a pause in the process to enable negotiations between NHS England and Daiichi Sankyo and since this pause was announced, we have continued to hold meetings with both parties to stress the importance of quickly reaching a deal.
In January we shared this open letter from women with HER2-low secondary breast cancer to NHS England and Daiichi Sankyo. Open letter to NHS England and Daiichi Sankyo | Breast Cancer Now
We’ll continue doing everything we can to ensure that we get a positive resolution.
Thanks for the update Bernard. I’ll keep my fingers crossed. Or move to Scotland!
Hi
I met with my oncologist yesterday to discuss ‘long term planning’ next steps and Enhertu was discussed as a potential next line treatment for me should the current Abemaciclib need to be changed.
Oncologist said she is attending a conference in April in Spain and that she expected this drug and one other new drug (not sure which one) would be approved. So fingers crossed 
It was helpful to learn more about different options, trials etc. as I have been on Abemiciclib, Fulvestrant and Zometa, which have stabilised the cancer meta to the spine, for one year, which is wonderful, but good to know about potential future processes and new cancer treatments. It was a good discussion and I’m glad I took the step - I requested the meeting.
encouraging 
Anjuli
Hi Anjuli
Did they give you a reason why they wouldn’t accept you? I Can imagine how difficult that was! I’m shocked especially as you’re in their catchment area.
B
Ladies on Paclitaxel -has there been any mention of your next line of treatment? I’ve been told Eribulin is next for me.
I’m doing ‘ok’ on taxol, hair thinning on top, need to be clever how I style my hair!
Hi Beebs
No real explanation.
I think they were maxed or something.
Obviously very disappointing.
But I seem to be on a good treatment plan that (fingers crossed) at the hospital who did take me on and they are really lovely in the chemo suite so not complaining too much.
Thank you.
Hope all going well with your treatment…
Anjuli
Hi Anjuli
So glad it all worked out and all is going well!
All good for me as well at the moment on Taxol, so I’ll enjoy the calm while it lasts 
x