Hello,
Has anyone with HER2+ had Enhertu yet or been part of the trials?
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.
take care,
J
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
Hi.
Did you have any luck with going 4 weekly.
Hope your ok… I’m going for dose reduction after the next one. Hoping it will help although l know you still suffer after lower dose.
Take care
Hugs
Morning ladies and Angie
on the lower dose as time went on I feel it much better to tolerate, my oncologist does not want 4 weekly at the moment to soon she said I can do 4 weekly for one off if I got special weekend coming up and I know I may be unwell to attend but then back to 3 weeks . Hopefully Angie when you are on a lower dose you would see the difference, even thou there are awful day here and there , but find as time going along with this lower dose I’m tolerate better , my doctor also extended my steroids to 5days after chemo which helps , so I have steroids on the day of chemo by IV then come home with 5 days worth if this makes sense then also got my ant sickness domperidone tablets . Take care
big hug theresa x
Morning.
Thanks Theresa. Really helpful information. My oncologist not happy to go 4 weekly at moment. Like you say she feels too early. Think l have been on it 3 months less than you. Started April this year.
Glad your feeling better at last. Will mention the longer steriods…
Take care everyone
Hugs
Angie xx
Hi there, could you kindly let me know how I can access the Enhertu private forum? There doesn’t seem to be much chat around this drug and I’d love to hear more about it? Thank you so much in advance
Hi.
I only know of this forum… Think maybe also a Facebook page but l don’t use that. You could try that. I know some of the ladies here do. Sorry not much help…
Good luck
Hi everyone
Greetings from Portugal, I am new to the forum and have just had my 7th infusion of Enhertu for MBC to bones and liver. I had been on various forms of oral chemo for the past 4 years for hormone driven disease, and then IV without result, however Enhertu was recently approved in Europe for low HER2 breast cancer for which I qualify so my oncologist, who is very caring and careful, started me on the 3 weekly cycle but at a lower dosage to observe tolerance, which apart from hair shedding kicking in now and a few days feeling sleepy I am finding it easier than some of the earlier therapies and my tumour marker is way down and my liver tests likewise so very happy bunny.
As the lower dose is working maybe this could raise a helpful discussion for anyone who is being recommended this treatment to have with their oncologist to avoid starting on the full dosage with the severe toxicity + debilitating S/E which can be so scary and having to reduce anyway. At the ripe old age of 83 I am so grateful that my insurance company approved this treatment which comes at very high cost - long may it last…
We can do this !!!
Hello ladies! I’ve got good news . I had my Catscan this week and my liver lesions are no longer there. This is my #10 Enhertu tx. My GI issues are resolving too. It’s just my fatigue which is not really bad. My Onco said that my body eventually will get used to it. Hope everyone is doing well. We got this ladies !
1 Like
Good evening friends,
Sorry I haven’t been around much. I’m either feeling absolutely yuk, or out and about trying to squeeze life into the good days (or asleep on the sofa!).
Morning girl that’s great news! Thanks for sharing
Just a few comments/ answers to questions from the posts I’ve read -
Facial flushing, yes I get it too. Often it’s a result of the steroids, so happens in the first few days.
Hair re growth - mine thinned badly (50%) after the first infusion (so it started coming out 3 weeks later) but as time went on, I realised it must have more or less immediately started to regrow, given how long the re growth was about 6 months later. This was all while using the cold cap, and I had two dose reductions, after infusions number 3 and 6.
Angie - I really feel you about the sickness ? I’m really struggling at the moment too. This cycle has been particularly tough and I have no idea why or what I can do to help myself. BUT … I’ve been to Spain for a week! We went to Barcelona and had such a lovely time. Diarrhoea threatened to spoil it the first couple of days but it improved after I maxed out on loperamide. It did me the world of good, I’d say just go, especially if you have somewhere easy and familiar to stay. You’re covered by the GHIC card if you need any medical attention.
Kim, you mentioned marijuana products to help with the sickness. Please can you tell us a bit more about that? You can DM me if you’d rather.
Camilleri, what is the Enhertu private forum and how can we access it please?
I get so much information from the Facebook group, it might even be worth people joining Facebook just to be able to access it. You can always ask a young person to help you get set up ? they’ll do it in moments! And you don’t have to post anything on Facebook at all or engage with it in any way, just skulk in the background and read the forum.
Camilleri I think you asked about taking a break for a holiday? I’ve planned to have two four-week cycles this summer to accommodate our holiday in Spain, and a family wedding, and I’ve done it before on this chemo and other treatments in the past. It’s actually the thing that keeps me going when I want to give up, knowing I can give myself one extra good week once in a while, and my team are happy with this. I’ll probably plan one in the winter too, to help get me through. I really need that extra good week once in a while, or I would give up altogether.
Hope you’re all doing OK, keep on keeping on
Jacksy xx
Hello everyone.
Soo pleased for you Morning girl with the excellent results…
Great Jacksy to get all your update. You are an inspiration to me at the moment because after only 5 l feel at times like giving up. Tiredness and nausea get to me the most. I wanted some 4 week break to get to Spain but because only had 5 treatments so far think l have to wait a bit.
How long before treatment do you ladies have to get your blood test?. Mine is about 4 days which limits when l can get away also. My bloods appear good though including neutrophils so l must be recovering between treatments…
Really pleased you have holidays booked Jacksy… I have booked another short break in Norfolk until l can get
Back to Spain…
Take care everyone
Hugs
Hello Ladies, Thank you for your positive messages. Hope your side effects are getting better with time. To Angie I usually have my blood works drawn close to my treatment like 2 days before.
Good afternoon Ladies!
I hope you’re all doing well. I have my blood drawn 30-45 minutes prior to treatment. My doctors office also uses a software called Noona- this shows my blood test results and is a great communication tool for healthcare providers and patients. Is show all past blood tests/procedures, so you can compare results. **tell your drs to research app.
As women, we tend to put others in front of us and often forget about ourselves, but it’s so important to make time for you and your happiness! Please know that you are all amazing women! You are stronger than you think and are all inspirations to the younger generations! Take the time to meditate, exercise, love and live! We cannot control our circumstances, but we can hold our heads high and keep fighting! I pray that this disease stops with us and the next generation won’t have to suffer! I’m very thankful for all of the women who fought before us, they gave so much, so we could have options! Praying for all of you!
kim
Hey girls,
Yes Angie, I have my bloods done on a Friday so they’re there for the Dr on a Monday, so they can authorise the chemo which I receive on a Wednesday. Like you say, if I plan to go away on my best full week in terms of energy etc, then I’m not back in time to have my bloods on the Friday! Very bothersome!
Kim I agree that we owe a lot to the women who went before us who took part in clinical trials or who campaigned for access to drugs like Her Elgin, and sadly died before they could receive it themselves. Yes isi creels hope we’re the last generation to live like this, and that medical advances like cancer vaccines, targeted drugs and genetic research can eliminate the need for chemo.wouldn’t that be great for our daughters, nieces and young friends?
Hope you’re all hanging in there. I had chemo today. I’m determined to drink gallons more water and be as active as I can to try and ‘push’ it through my system, to see if I can improve things at all. I’m also trying ondansetron again (it didn’t touch the nausea when I was on the full dose of Enhertu, but now I’m on a lower dose it just might help)
Thanks for the pep talk, Kim! Let’s all do some nice things for ourselves. I went to a posh town near me and trawled through the very good charity shops on my own yesterday for an hour or two. It’s little bit of me time and doesn’t cost the earth!
Take care
Jx
Hi!
I’d just like to share my experience about Enhertu. I’m from France - but I do speak English!
Been on the trial for 4 years and a half, done 71 infusions so far. The clinical trial is about to end but I’ll keep on getting treated with enhertu as long as it works.
I’m glad it’s working, the last results are groundbreaking.
I just can’t believe I’m still alive and, as I always say, in my misfortune, I’ve been really lucky.
I’ve never reduced the dose, though I feel very tired now. I might ask to do so…
I haven’t read all your conversations, but feel free to ask if you need some answers.
And yes, I skipped some sessions to enjoy summer! My hair thinned, but I had it very thick before. Side effects are tolerable after 3-4 days.
I would feel very happy sharing my experience and help.
Take good care and enjoy your life as much as you can.
Dreyaaah
Hi dreyaaah, wow four years on a trial? Which trial are you on? I’m on a Destiny 9 trial and have had eight treatments.
I didn’t think the trials lasted that long.
I also have minimal side effects and good results. I read of other women who have taxol for six or eight treatments and then go on maintenance therapy Herceptin after.
Is that something that will be a possibility for you or does your doctor say you need to stay on Enhertu?
Hi Deb,
I was on Destiny Breast 4 trial.
I’m glad you have good results.
If I remember well, after few infusions, my body was fully responding.
I kept on being on the trial because Enhertu worked (and is still working!).
I had to go through many scans and MRIs (I had brain metastasis).
My first chemos were Taxol + FEC (dunno how you call it) for 6 treatments then Herceptin.
And hormone therapy but we discovered metastasis a year later.
Then I had 36 infusions of Kadcyla then the brain metastasis appearared and I entered the trial.
There is no way I’m going back on Taxol (worst experience ever).
I will stay on Enhertu since it’s been approved, I’ll have less follow-up care (less scanners at least). As long as it works. Hoping to maybe reduce the dose, or space out the infusions more often.
Let me know how it goes in the Destiny 9 trial, hoping you’ll be as lucky as I am!
I’m glad Enhertu is working so well for you. This is my first line. I go for ct scans every six weeks, do you still get monitored closely after four years scan wise?
It’s nice to be monitored so closely however the six week scans are very difficult mentally.
You should be thankful Enhertu is your first line! The “basic” lines are way more difficult to handle.
I got monitored every 6 or 9 weeks but I think it’s going to be every 3 or 4 months now that I’m done with the trial. Are you doing echocardiogram as well?