Enhertu: Good morning. Has anyone taken... - SHARE Metastatic ...

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Enhertu

Felicia1228 profile image
37 Replies

Good morning. Has anyone taken Enhertu for breast cancer? What are your pros/cons?

Little back story: dx stage 4 metastatic breast cancer, ER/PR +, HERS2 -, but I am considered HERS2 low w/ a count of 1, in April 2022, I was 44 at the time. Left breast, lymph node in left armpit, multiple spots in my lungs, spot on L1, and a bunch of lymph nodes in my chest. Ibrance/Letrizole was my first treatment, for about 6-7 months. Switched Letrizole to Faslodex, due to minimal growth, after two scans. June of 2023, PET scan was devastating. Started Taxol chemo June 2023, for 12 weeks. Started everlimous/exemestane Oct 2023…scans were fantastic until three weeks ago, hence the offer for Enhertu. Taxol (ughhh)…would love some feed back. Keep fighting warriors!!

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Felicia1228 profile image
Felicia1228
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37 Replies
doulos21 profile image
doulos21

My MBC was dx as de novo in Jan.2021. ER+PR-HER2Low (1+) On Letroz/Ibrance for 18 mos, on to fulvestrant which did NOTHING, then Guardant360 test showed why those were failing...mutations were then resistant to hormone route...switched to Capecitabine...great effect until severe shingles outbreak, then cape quit working at that time...moved on to Enhertu Oct.2023. Massive decline in tumor markers...from Oct.23 to now, down about 90%. Enhertu has been the easiest protocol for me,,,great energy, feeling very well, lost about 95% of hair, but otherwise very good. Now, at 8.5 mos, Signaterra & RaDar CTC tests showing significant uptick, but 27.29 still stable...CTC's will show things earlier than tumor markers. PET scan in July will show story...although 27.29 has continued downward, last 3 showed marked reduction in rate of decline, so that with CTC's are signals to me we're probably closing in to end of efficacy of Enhertu. MedOnc at Mayo indicated HER2low folks might only see about 8-10 mos of use of Enhertu...so not surprising. I know some have struggled with Enhertu...it's been fabulous for me....never been sick or fatigued on it, just hair loss. Best wishes for success for you!!

Felicia1228 profile image
Felicia1228 in reply todoulos21

Can I ask how old you are? What is CTC? I’ve never heard of that test. We did the mutation test and I have no mutations, at least not at this time.

Andersl profile image
Andersl

HiI was diagnosed with stage iv in 2019.

I can't recall all the treatment names I've had. I have had several recurrences (brain, liver, lungs).

I've been on Enhertu every 3 weeks for almost a year. No recurrence.

In terms of toxicity:

1 extreme fatigue for a week

2 feeling nauseous/low appetite. The anti nausea drugs help me to manage.

Benefits: (in my case) successful in holding cancer back.

I hope this helps x

Felicia1228 profile image
Felicia1228 in reply toAndersl

Thank you so much!!

CTGirl1962 profile image
CTGirl1962 in reply toAndersl

Hi!! I have had just one infusion of Enhertu and I’m so wiped out one week later. Does this end? I don’t think I can function like this. Thank you for all your advice. I’m so desperate!!! 🙏🏻

CTGirl1962 profile image
CTGirl1962

Hi Felicia! I’m about to start this on Thursday!!! We need to key in touch.

Jody 🙏🏻🩷🙏🏻

Felicia1228 profile image
Felicia1228 in reply toCTGirl1962

That would be great!

CTGirl1962 profile image
CTGirl1962 in reply toFelicia1228

Sitting in the chair now! Waiting on my first infusion. 🙏🏻🙏🏻🙏🏻

Shafight profile image
Shafight in reply toCTGirl1962

Hi. I wish you the best. About a week after first and every session, I have had uncontrollable diarrhea. Now I have a prescription for it

CTGirl1962 profile image
CTGirl1962 in reply toShafight

Noted!! I have loperamide at the ready!!! 🙏🏻🙏🏻🙏🏻

Shafight profile image
Shafight

I’ve taken several drugs for 3 years. Now I’m on Enherto No pet scan yet but feeling good. My Dr is giving me hope it’s working. My biggest side effect is horrible diarrhea. Give it a try!

Felicia1228 profile image
Felicia1228 in reply toShafight

How many rounds have you had?

Shafight profile image
Shafight

just finished 4th. Every 3 weeks

CTGirl1962 profile image
CTGirl1962 in reply toShafight

Hi! How are you feeling?

Jody

Felicia1228 profile image
Felicia1228 in reply toCTGirl1962

I’m ok. About to walk into my oncologist office and talk about when treatment will start. How are you feeling?

CTGirl1962 profile image
CTGirl1962 in reply toFelicia1228

So far, so good!! Just had my very first treatment. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

Felicia1228 profile image
Felicia1228 in reply toShafight

Which type of BC do you have?

Shafight profile image
Shafight in reply toFelicia1228

I have stage 4 metastatic bc spread to my bones and now liver. I’ll get bloodwork and PET scan July 9 and find out if enherto is working. I’m feeling better since on it!

Felicia1228 profile image
Felicia1228 in reply toShafight

That is awesome!

CTGirl1962 profile image
CTGirl1962 in reply toShafight

Praying it is working as well as it’s feeling!! 🙏🏻🙏🏻🙏🏻

Andersl profile image
Andersl in reply toCTGirl1962

Try another 1 orc2 cycles. Your body may adjust. But if like me, you feel you can't cope, ask for the dose to be lowered. I'm on half dose. Fifteenth cycle next week. Scans fine. However, I too am now feeling washed out even on half dose. Ill ask consultant what are the options now.

All the best

CTGirl1962 profile image
CTGirl1962 in reply toAndersl

Thank you for the advice. I sure hope you start feeling better. This is not for the weak, as I have just experienced. It’s the worst I’ve ever felt since all this cancer stuff started 14 years ago. 😢

Shafight profile image
Shafight

why taxol before Enhertu?

Felicia1228 profile image
Felicia1228 in reply toShafight

My scan last June was horrible. Everything I had started with, minus the spot on my L1, had returned, plus a spot on each of my adrenal glands.

Shafight profile image
Shafight

is taxol the strongest drug for us

Felicia1228 profile image
Felicia1228 in reply toShafight

I’m not sure on that. My niece, who is 31-ish, just got EMT through 12 weeks of three different chemo’s. She was diagnosed stage 2, 3N. Bless her heart, she rocked it with very little side effects.

Shafight profile image
Shafight in reply toFelicia1228

Good for her a trouper!

Felicia1228 profile image
Felicia1228

Good morning! My first Enhertu treatment is scheduled for the 11th. How is everyone?

TGIF!!

Iwasborntodothis profile image
Iwasborntodothis in reply toFelicia1228

Mine is the 8th - I am glad that we will have several of us on this drug to share stories and ideas.

Felicia1228 profile image
Felicia1228 in reply toFelicia1228

Good morning! How are all warriors today?

CTGirl1962 profile image
CTGirl1962 in reply toFelicia1228

I’m one week post infusion (my first dose). I felt ok the first few days and then BOOM!! Extremely fatigued, bad diarrhea. I’m feeling so bad. I’m about to take Imodium to quell the diarrhea. Wish me luck and pray for more energy!!! 🙏🏻🙏🏻🙏🏻🩷

Felicia1228 profile image
Felicia1228 in reply toCTGirl1962

Ask if they will cut it back to half the dose. My oncologist agreed, we are going to start at half the dose, do three rounds, then a PET to see if it’s working.

CTGirl1962 profile image
CTGirl1962 in reply toFelicia1228

I’m definitely going to ask to be cut back on my next dose. I don’t think I could handle this again. It is so horrible. I can barely stand up by myself. I feel like I’m 100 years old. I’ve definitely aged from this!!! 😢😢

Felicia1228 profile image
Felicia1228 in reply toCTGirl1962

Are you taking any holistic supplements?

CTGirl1962 profile image
CTGirl1962 in reply toFelicia1228

No. I don’t feel like I can force another pill down. I take Balance of Nature. That’s enough for me right now. 🙏🏻🙏🏻🙏🏻

Liessie2014 profile image
Liessie2014

hello , I am good thankyou , good luck with your treatment , ❤️

Felicia1228 profile image
Felicia1228

Hi ladies! How is everyone feeling? I had my first dose of Enhertu this morning. Feeling ok. When did your side effects start?

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