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Enhertu

40 REPLIES 40
polehna123
Member

Re: Enhertu

I’m her2+ and have been on Enhertu for several months. This treatment has been more successful than my original chemo. I do get tired, thirsty and hair is still thinning, but I’m so thankful for this medicine!  My tumor markers have gone down dramatically and I feel so much better. 
We are so lucky to be living in a time where we have options and are living longer.  I’m very blessed and thankful!

kim 

Jacksy
Member

Re: Enhertu

Hi KimsHusband,

I’m on a Facebook group simply called ‘Enhertu’ with lots of women all over the world who have had a longer time on this treatment. Im happy to report that a large number have definitely seen a positive response in their brain mets! You could join the group and see for yourself if you have Facebook.

all the best for your wife’s treatment 

Jx

KimsHusband
Member

Re: Enhertu

Hi we have the same question.  My wife is also being advised by her oncologist to start Enhertu as her triple neg breast cancer is in her brain.  She's been doing stereotactic radiation but they keep coming back.  Does anyone have any history / results Enhertu has been successful passing the brain/blood barrier? 

lyndam1
Member

Re: Enhertu

Her2 pos

109876
Member

Re: Enhertu

Yes I got my second dosage two days ago.

I feel pretty good on it just tired,

Concerning and it’s at my cancer markers went from 99.82104 after I had my first one doctor says to be patient

Secondarysister2
Member

Re: Enhertu

A quick question… ladies who are on Enhertu… Are you HER2 positive or negative? Xx

Bythesea
Member

Re: Enhertu

Hi Legoland

i was on Kadcyla for 2.5 years and loved it. When I had some progression it was minimal and I fought and tried to stay on Kadcyla. Skin mets don’t show up on Ct scans and mine had reappeared when I had node progression. I think I had tried to ignore them and was concentrating on my nodes. Anyway….. I started Enhertu and my skin mets disappeared again. I know it was the right decision to change! (Think I had just buried my head in the sand)

My Enhertu journey has been bumpy, although no hair loss 🤞

My last infusion we removed the anti sickness drugs (I wanted to see if the constipation they were causing was intensifying the nausea)

No anti sickness and nausea not any worse 🙌

Next I’m going to try to drop the steroids.

First scan was good so Enhertu and me are hopefully in it for the long run so we are going to be best friends soon xxx

Good luck, you know you best ❤️ (and never take no for an answer 😜)

Dennie2014
Member

Re: Enhertu

The only side effects I've had while on Enhertu is hair thinning and hair loss and double vision. 

Legoland
Member

Re: Enhertu

Hi, It's been helpful to read your correspondence. I'm about to start Enhertu on Monday. I have breast cancer with has spread to the lymph nodes and skin. I was on Capcitabine which has made the  the lymph node cancer dormant but the skin mets keep growing. I have very few side effects from Capecitabine. My dilemma is whether I should change from a treatment that is doing well for all of my body apart from the skin and has few side effects, to a treatment that sounds like it will make me feel ill ,due to the side effects, and  that I can't be sure will solve my skin met problems? Wishing you well.

 

Jacksy
Member

Re: Enhertu

Did they give you steroids? If not, then I’m surprised you need to ask!😂

Mine kick in straight away. The first five or so days I feel fragile, with nausea and lots of burping and gurgling and diarrhoea. I also get sore skin/weird rashes and sore lips and sore throat. After that it’s a different kind of nausea linked to fatigue and more of a headachey ‘travel sick’ feeling. I have to try and pace myself in the day or I feel rough in the evenings especially.

People on steroids often feel fine for the first 3 or so days until the steroids stop, then feel worse days 3-7.

But everyone’s body reacts differently, and mine has been a bit different each cycle.

Hair loss usually starts around the time of your second infusion, I.e. 3 weeks after treatment day.

if you’re feeling good then enjoy it!

Where by the sea are you? I’ve covered most of the east and south coasts, and up to north Devon but not the west coast so much.

Look after yourself

Jxx

 

Bythesea
Member

Re: Enhertu

Hi Jacksy,

Yes actually by the sea ❤️ 
when do your side effects kick in??? How many days after infusion were you sick or can it just sneak up on you??? And how many days before the hair shedding starts???

Feel like I’m just waiting………. Cocktail on Wednesday and so far so good 🤞 Is it a false sense of security then Bam 💥???

xxx

Bythesea
Member

Re: Enhertu

Hi Jacksy,

Yes actually by the sea ❤️ 
when do your side effects kick in??? How many days after infusion were you sick or can it just sneak up on you??? And how many days before the hair shedding starts???

Feel like I’m just waiting………. Cocktail on Wednesday and so far so good 🤞 Is it a false sense of security then Bam 💥???

xxx

Jacksy
Member

Re: Enhertu

Hi there Bythesea,

Hope it went OK yesterday and you're not feeling too bad. Ive been on this since June and I was sick yesterday! that's only happened once before. I think it was maybe because I really couldn't face eating anything as I felt really sick from the get-go. An empty stomach is not your friend on this treatment. 

I live in Hertfordshire and get treated at Mount Vernon cancer centre just over the border in Middx. Are you actually 'by the sea'? If so Im jealous... I love the sea.

Hope you're feeling OK. Let us know how it goes

Jxx

Bythesea
Member

Re: Enhertu

Eeeeek on the way and hadnt considered cold cap 😳 Used it for other treatments and it worked great 😳

funny you get no premeds??? It’s the steroids I’m not keen on. Where abouts are you?   
thinking of you today too xxx

Jacksy
Member

Re: Enhertu

Hi there Bythesea,

I’m getting my Enhertu today too, so I’ll think of you! Try not to panic, it does affect everyone’s body differently, and there are some people who hardly get any side FX. ( I’d like to spit in their general direction 😂!)

I don’t get any premeds and have only ever been offered one, the anti-nausea fosaprepitant which I found I couldn’t tolerate.

Take a few different things to nibble on - I’m generally better if I have a sandwich or nibble on crackers etc rather than eating nothing. 
Will you be using the cold cap? I am, and I hadn’t used it before. I now take a hot water bottle and extra jumper.

The great news is this is usually a very effective treatment. It’s working for me too ( 2 scans showed significant shrinkage and recent one is stable so it could all be dead tissue or lying dormant)

You can do this! Muster as much emotional support as you can from friends and family, and do whatever you need to do to get through this first one.

we’re all holding your hand….

Jxxx

Bythesea
Member

Re: Enhertu

Hi ladies,

Late to the party but starting Enhertu tomorrow! Kacking it 💩!!!

I’ve asked this in on the Enhertu fb so apologies if I’m like a broken record but what pre meds do you get??? Hoping to compare as we are mostly in the uk and how are you ladies getting on???

xxx

Jacksy
Member

Re: Enhertu

Oh dear! Hope they’ve sorted you out and you’re home now and recovering. What a nuisance. I’m sure they’ll start you as soon as your infection’s over, but it’s not good having to keep anticipating it….

I spoke to my team today and I’m going to have a second dose reduction, they’ve agreed. I just can’t tolerate the grinding side effects any more. It’s been a hard decision and I’ve been procrastinating over it for months. But enough is enough.

really hope you’re on the mend

Jxx

lyndam1
Member

Re: Enhertu

Hi, begining to feel I'll never start.

Went for pre assessment, turned I had a temperature so they abounded assessment.

Did some bloods to check for infection, found out yesterday these are elevated at 32, 82 ten days before that. Clearly the antibiotics I had didn't work. Temp was fine yesterday, I'm currently in A&E as I can't my temp to go below 38.

Have joined the enhertu fb group, very informative. 

Jacksy
Member

Re: Enhertu

Hi Lynda,

yes I’ve been on it since June. Two scans so far and it’s working a treat (that’s the good news). However I’m still finding it a tough treatment. Nausea and fatigue mostly, and my hair has thinned a lot despite using the cold cap. Friends say it still looks fine, but I feel self-conscious about the balding crown. Not sure if they’re just being kind! 
Even two weeks after the infusion I get v fatigued and therefore nauseous most evenings. I feel like I’ve lost my mojo although I still try to keep active, going out and seeing people.

All the best for your treatment. There are others on the Facebook group ‘Enhertu’ who have no nausea and few side effects, but a lot of us who do as well. I’d recommend joining the group - loads of good advice and support

Jx

 

lyndam1
Member

Re: Enhertu

Hi Jacksy

Have you started enhurtu yet ?

I've got my treatment pre assessment tomorrow,  have already asked about using cool cap has hair loss possibility is my biggest deal.

Lynda xx

lyndam1
Member

Re: Enhertu

Thanks for the info Helen, there's always something new to learn and it's great that we can share this information. 

I'm still waiting to start enhurtu,  have a pre treatment assessment tomorrow,  so hopefully should start in the coming week.

Is the densomab helping and are there other treatments available? 

xx

helen44
Member

Re: Enhertu

Hi lyndam1

Hope you are keeping well with your treatment.

You asked how did I know that I changed receptors: my original biopsy 9 years ago showed HER2 negative, 7 years ago I had a bone met removed from my sternum which tested HER2 positive & following 20 months of both herceptin & kadcyla for HER2 positive disease these treatments stopped working. Onc attempted a liver biopsy but was thought too risky and I was deemed to have switched receptors again so have continued with the HER2 neg chemos until June 2021 when nothing was halting the progress of my liver mets. I was eligible to try Enhertu as I had previously had herceptin & kadcyla but 4 cycles didn't make any difference to the liver mets. In Dec they did another liver biopsy but unfortunately the samples taken were all normal cells as opposed to cancerous ones; I was hoping that we might establish whether I have any gene mutations that would enable access to a drug such as alpelisib - no such luck though! I am not on any treatment at the moment other than denosumab.

It is unusual to change receptors but not unheard of - a friend of mine was the same.

All the best, Helen x

abigailb
Member

Re: Enhertu

thank you - I have requested to join the Enhertu Facebook group.

 

Many thanks for that!

I am starting Enhertu this Thursday

lyndam1
Member

Re: Enhertu

Hi Helen, thanks interested to hear your receptors have changed 3 times. How did you discover this?

I've always been treated for her2 pos, and I but discovered that my tumour sample has never been tested to prove this.

I've recently questioned if it could be checked by taking a new biopsy, but the answer I got was no, so I you're still Her2Pos!

 

Jacksy
Member

Re: Enhertu

I just use the cold cap that the hospital provide. It needs to be on for, I think half an hour before the infusion, then I keep it on for an hour and a half afterwards. It extends your time in the chair but the flush & removing the needle all takes up a bit of that time 

Jx

Guest user
Not applicable

Re: Enhertu

Hello Jacksy, 

Thank you for your reply. 

Sorry to hear that Enhertu causes hair thinning. I had the same with my sixteen weeks of Paxlitaxel. You would have had to know me very well to see the hair thinning but it is a nuisance that even the cold cap can't stop it.

 

Angel Eyes 

Eiram1
Member

Re: Enhertu

Thanks

do you just use the hospital cap at the infusions And a few hours after, how many are you after -is it the trial you are in 

i am thinking of getting the manual ones leaving them on after for a bit 

Jacksy
Member

Re: Enhertu

Hi there,

 I think mostly people experience thinning rather than complete hair loss, but it all depends on the individual. 
im using the cold cap and although there seems to be quite a bit of hair coming out each day my friends and family assure me it doesn’t look any different.

All the best with your treatment 

Jx

Eiram1
Member

Re: Enhertu

Hi I was told I may need to start Enhertu for her2 trial, Do cold caps work with this drug?
have people kept their hair using it

thanks

Jacksy
Member

Re: Enhertu

Hi ndw,

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?

Jx

Ndw32548
Member

Re: Enhertu

Hi, any updates from anyone using EnHertu? I’m especially interested in its use in brain tumours and side effects. Thanks very much. 

Jacksy
Member

Re: Enhertu

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!

Jx

helen44
Member

Re: Enhertu

Hi Jacksy

Thanks for your reply. I am going to PM you now.

Helen x

Guest user
Not applicable

Re: Enhertu

Hi Jacksy, 

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

Guest user
Not applicable

Re: Enhertu

Hi, 

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

 

 

 

Jacksy
Member

Re: Enhertu

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

J

Jacksy
Member

Re: Enhertu

Hi Helen, 

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

J

helen44
Member

Re: Enhertu

Hi Jacksy

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.

Helen x

Guest user
Not applicable

Re: Enhertu

Hi Jacksy, 

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+. 

Wow. 

 

Angel Eyes x

 

Jacksy
Member

Re: Enhertu

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.

take care,

J

 

Guest user
Not applicable

Enhertu

Hello, 

Has anyone with HER2+ had Enhertu yet or been part of the trials?

 

Angel Eyes x