I’m a 34 year old woman. I was diagnosed with breast cancer back in August 2022. After chemotherapy, radical mastectomy, radiotherapy, hormonal and biological treatments, i then was diagnosed with metastatic her2+ lung cancer. I started enhertu treatment back in November 2023 and i had 3 cycles up until this moment. After my assessment last week, the doctors found that i have an almost complete response and that i’m 90% clear. I could jot be happy, i could not bear the idea that i will be taking this treatment long term. My next session is on Thursday and i’m still suffering from side effects. I’m weak and dizzy most of the time, i have chills and burning sensation in my skin, i can barely walk and the side effects don’t seem to get any less by time. I’m basically only existing in between sessions. I’m an assistant director at my work responsible for a cluster of countries, and i’m thinking of taking unpaid leave for a while because I literally can’t work. I used to be healthy, athletic and so beautiful and successful. And i used to be strong and optimistic, even when i got the news that i had cancer, i was so strong and determined to beat it. But now i feel like i’m just loosing the well to live. My doctor reduced my next dose but i have very little hope that it would affect the severity of the side effects. Any words of encouragement pr Enhertu survivors would help. Thanks.
Oh bless you, it sounds like you’ve had a really rough ride.
Is there anything that makes you feel a bit better?
I know it sounds crazy, but have/can you try a bit of exercise?
I went on a NHS safe fit trial, which meant you got a personal trainer. It starts with a little exercise and then develops over the year. I feel so much better for it.
Is it worth meeting your nurses and explaining how you feel?
Might also be worth calling the nurses at BCN to see what they say.
There’s also a young persons secondary BCN online meet-up that you might like or they even gave an in person get together planned soon.
I hope you find some light soon.Xx
I’m on Enhertu and Pertuzumab as my first line since August 2023. I also have lung nodules, and have had nine treatments so far with almost a complete response.
Luckily I have do not suffer from many side effects, mostly lack of appetite occasionally and some stomach issues.
I took a six month leave from my job as an Executive Director and went back this past week as I feel I need my work to feel “normal”
I struggle with being on Enhertu long term as well as others go on a maintenance drug after the chemo. I haven’t discussed this with my doctor yet because I’m on a clinical trial. But could it be an option if you have almost had a complete response to be on Herceptin? I am also HER2+.
When I do feel physically not great I push myself to go for a walk other times I really just take it easy and try to not feel guilty about it. I will see how it affects my work life.
I have also heard of others getting a dose reduction with that helping.
Hopefully your medical team can help you find some relief.
Hi Leenalwalk,
I can definitely understand how you feel and I know everyone reacts differently. I wanted to tell you I had 74 cycles of enhertu so far, and I’m still alive.
Side effects can sometimes be hard, but there’s still hope, life is a rollercoaster, even for those who don’t have cancer.
I’m checking this forum from time to time so feel free to ask questions.
Take care and don’t give up, I’m sure your doctors will find a way to make you feel better.
Welcome to the forum @leenaldwaik
I am so sorry to hear what you’re going through.
As @tibblek mentioned our nurses are always here to talk things through, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
The forum is full of wonderful people like those who have already replied to you, and I hope that you find the support you are looking for.
We’re thinking of you,
Lucy
Thank you all so much. Appreciate your suppot.
Hi Leenaldwaik,
I absolutely get where you’re coming from! I’ve been on Enhertu for two years now, and it’s still a struggle, although is HAS got a bit easier than at the beginning. I had a dose reduction after the first three sessions, and another one after the next three. It’s still being very effective even on the lower dose.
After my first scan, when they told me it was working I just cried - because that meant I should stay on it and i was really hoping I wouldn’t have to. They couldn’t understand why I was gutted at such good news. I really felt like I was being poisoned…
I’m on a Facebook group called Enhertu with people from all over the world who are a year or two ahead of us. I’ve learned a few things that help me:
Drink absolutely loads of water every day for the first week, it really does help as Enhertu is so drying.
Some people become dairy intolerant so if you’re having horrendous diarrhoea, try cutting back on this.
Try to keep moving even on the worst days. Just a walk around the block seems to get everything moving through your body.
Keep experimenting with different meds for nausea, or steroids. I was having a reaction to the drug at first, feeling really woozy and sick, so now I have a steroid premed and some to take home. I’m currently experimenting with reducing the ones at home over the three days so I don’t get the blues after I stop.
I became best friends with the pharmacist and we worked our way through all the anti-nausea meds, as that is my worst side effect. I’m now on a small dose of levomepromazine, an anti-psychotic drug. It knocks me out at night, but helps with the nausea the following day, and I take that for 7 days.
I’m a bit concerned about your burning sensation under your skin, so you should definitely talk to your team about that and about how you’re feeling generally. They are there to help.
Oh, I also have the option of a break twice a year (skip one treatment) so I can have a nice holiday or to help get me through the winter. It has made a big difference feeling I have some control over this. I’ve also had a couple of four week cycles when I’ve found it particularly hard going. This just gives your body a chance to heal before the next blast.
I’m so sorry you’re struggling and I really hope you find some answers with your team to make this easier for you. It’s really tough just looking into the future and thinking will this be it for the rest of my life? But try to only look one step ahead and plan lovely things to do with friends and family on your best days.
Pm me if you’d like
All the very best
Jacksy
Hi [dreyaaah, so glad to hear you’ve been on so many cycles! I just had my second. This has been a fought few weeks for me. I’m really struggling with the fatigue and not sure whether it will eventually fall into some kind of cyclical pattern? My hair seems to be falling out a lot now as well, but it’s so unclear whether hair loss happens to everyone or not. I think I’m being delusional in hoping I could have kept it. My best xx
Hi Skip00,
I’m sorry to read you are struggling with Ehertu.
Did you have other types of chemotherapy before ?
I went through the basic one (Taxol /Taxotere) and lost my hair (I also was delusional about keeping it as well ) but I was young I guess… Then I had 36 infusions of Kadcyla (my hair had grown at that time) and 5 years on Enhertu so far (clinical trial at the beginning).
I don’t know if because I lost my hair once counts in the fact that I still have some now. I must admit it used to be very thick and wavy. Now, it’s just straight and thin but I feel lucky. We also realized with my oncologist that I was low on iron that’s why I keep on losing it a bit.
For the fatigue, it’s one of the side effects. I’ve been on cortisone for years now (cerebral radionecrosis) and it helps with the fatigue, that’s why I don’t feel it. I would not recommend it though, I’m no doctor! (+ it ruined and is still ruining my bones).
Every cancer is different, but I definitely would recommend to talk to your oncologist to help you deal with the fatigue.
You’ll see how it goes after few infusions (my results were excellent after 3 or 4 ).
This treatment is revolutionary.
Be strong (you know you already are!)
Take care