me again! I just wanted to let you know there are quite a number of people I’ve heard of having Enhertu for brain mets, and several with fantastic results. Their oncologists have deliberately chosen this treatment as it crosses the blood/brain barrier. If you’re on Facebook I would join the group called Enhertu and have a read of people’s comments.
As far as side effects go I had my second round two weeks ago and I’m still finding it really tough I’m afraid to say. Dreadful nausea and upset stomach, and now the fatigue has set in. I was given an anti-emetic premed this time, which softened the effects marginally, but I think I’ll be asking for a dose reduction if the third round is equally hard (hopefully they’ll try adding something else in for me next time). A lot of people do seem to struggle with the side effects, but feel it’s worth it as the treatment is so effective. There are also many people for whom the side effects are minimal. It all just depends on how your body responds. Thankfully I haven’t had any hair loss yet (I’m using the cold cap).
I hope this is useful. Are you expecting to start on Enhertu soon?
Hi Angel Eyes,
Yes it’s given IV through my portacath . It.’s a 90 minute infusion the first time, then if all is well it will be over 30 minutes thereafter, with saline either side. And then the cold cap adds more time each side to that, so I guess we’re looking at about 3 hours, as you say.
Im very happy to answer anything if I know the answer!
Forgot to ask:
Is Enhertu by IV?
Is it the same kind of routine as chemo - slaine first, then IV Enhertu, then saline again? The fact that you wear the cold cap makes me think the whole treatment takes about three and a half hours?
Thank you for answering all my questions.
Angel Eyes x
Sorry to hear Enhertu has side effects.
My Consultant told me nothing about it (no reason why she should - I'm only nine months into Herceptin and Perjeta). She just mentioned it to give me a bit of hope for the future. I've not come across any scholarly articles about it.
Sounds like it's a chemo based drug - (or is it classed as Targeted?) The dehydration sounds cope-able with but sorry to hear the cold cap is needed. 👖
Angel Eyes x
Hi Angel eyes,
Sorry I didn’t mean to ignore you! Yes I’d been waiting for about 6 months for Tucatinib/Tukysa to get through the licensing process, checking the European drug agency website, etc. And then suddenly Enhertu was available with no warning! Most peculiar.
Are you likely to be starting on it soon, or we’re you just interested in it as a potential future treatment?
Take care now
Welcome to the club!
I’m sorry to say it’s been pretty harsh to start with, but some people report that it gets easier. However, it does seem to be very effective in a lot of cases - some amazing stories of tumours shrinking away to nothing in the first few months! And as the chemo is ‘loosely’ attached to the cells, it has an effect on any surrounding cells that aren’t HER2+ so that should be good for you, with your cheeky changeable little cells.
It makes you very dehydrated so it’s important to drink loads. I’ve suffered mostly with pretty awful nausea/headaches and some gastric discomfort and reflux. I also got constipated (due to the anti-nausea meds) which didn’t help. Now ten days later I’m feeling pretty fatigued.
The best source of info I’ve found is a Facebook group simply called Enhertu. There are about 150 people on it, mainly from the US and Europe, so it’s great to hear people’s experiences as some have been on it for over a year. A lot of them get a variety of premeds which they say help with the side FX, so that’s something I’m planning to ask about if things aren’t better with my second dose.
im trying the cold cap as there’s a 50% chance of hair loss/thinning.
When will you be starting, have you heard yet? Wishing you all the best. Please keep in touch, it would be good to share our experiences
Take care of yourself while you wait
I am about to start Enhertu as well - it's an option I didn't know about until yesterday. My liver mets are increasing and I have already had 14 other drugs in the last 9 years due to the fact that I have switched receptors 3 times. I am very interested to know how you are getting on with it - I do hope it's manageable for you and doing some good.
Thank you so much for your reply and we'll done for being on Kadcyla for six years. That's wonderful.
Interesting what you said about Enhertu taking the medics by surprise. I nearly fell off my chair when my Consultant dropped in casually that there was a new treatment. There seem to have been lots of new treatments for ER/PR+ but not so much for HER2+.
Angel Eyes x
Hi Angel Eyes,
I’ve just been told I’ll be starting Enhertu in a few weeks time. I’ve been on Kadcyla for six years but my secondaries have been progressing slowly over the past year and are gathering pace. I was waiting for Tucatinib/tukysa, but that was taking too long to get licensed and through NICE. It seems Enhertu has taken the industry and medics by surprise as it’s dashed through licensing and was accepted by NICE at the end of April.
I too would be really interested to hear from anyone who has been on the trials or received it by any other means.