What should I expect on Enhurtu?

[Andersl]

Hi,

i start Enhurtu on Monday.. i"ll be pleased to know what side effects you've had on this drug and if overall, you found it manageable?

[GratefulThriver]

I haven't taken it, but wanted to see the replies for research, in case I ever do go on it. I hope people reply before Monday, so you feel encouraged!! Happy 4th!!

[Andersl in reply to GratefulThriver]

Thank you so much. I've been off chemo for 3 months now while I had Gamma treatment and a small op. So I'm doubly apprehensive as you can imagine. Yes let's hope there are other replies :)My thanks again x

[Hopeful4Cure]

I started it on the 20th of June. I was on many other treatments and you can cross reference my posts and others by simply searching enhertu in the search box in the upper right of this site. I too was apprehensive, as my tumor markers had gone up from 800 to 1100+. The first treatment was about 3 hours. No issues whatsoever and my doc ok'd me to return to the states on a flight on Thursday, so just 2 days later. I have had no problems. Maybe a bit tired, but that would be jetleg. I am due to see doc on the 11th. Blood work and an eco cardio onthe 10th, just to make sure my heart is ok for this treatment. Hang in there and I hope that your treatment won't cause you any issues either. I am hr/pr positive and her2 low, that is why other treatments really never completely helped. Blessings

[Andersl in reply to Hopeful4Cure]

Thank you so much for taking the time to respond.Your message is very encouraging.

Best wishes xx

[Adele_Julia]

I started Enhertu on Thursday of this past week. Join a Facebook group called Enhertu- fabulous ! Women on there from the past two years when the drig came out. Side effects generally don’t appear until day 4-7!when enhertu drops its payload so to speak. I’m on day 3 after my first infusion. So far so good !

[Andersl in reply to Adele_Julia]

So helpful. Thank you x

[DorothyR]

I just took cycle 17.I have fatigue about 3-4 days after infusion which usually lasts 1-2 days.

My big side effect is constipation and I just take miralax or eat prunes.

I do have some joint aches but resolve that with Tylenol or Advil.

Be aware of the box warnings (discuss those with your doctor)

My infusion is every 3 weeks with anti nausea and steroid pre med. Between the pre med and Enhertu takes aboutb1 hour.

Best of luck.

[Andersl in reply to DorothyR]

Thank you. The info on your experience is very helpful.Best wishes x

[LibraryGeek]

Just wanted to say good luck. Am hearing very good things about Enhertu. I am in the UK so not available yet for HER2 low but I hope it will be soon- although I may just be HER2- and not low.

Jackie x

[Andersl in reply to LibraryGeek]

Thank you.I'm in the UK too. What is HER2low?

X

[LibraryGeek in reply to Andersl]

I believe it means that there is not enough to be HER2+ but is not completely HER2-. In the US Enhertu is now being given to some ladies who are classified as HER2 low. As a former librarian I am always gathering potentially useful information from forums, some would say obsessively so!

Are you HER2+?

x

[Andersl in reply to LibraryGeek]

Yes x

[GratefulThriver in reply to LibraryGeek]

I was td I was HER2 negative and have thus thought I was until I looked at my recent appointment data in my online records and it says HER2 low. Hmm? What to think of that?

[Andersl in reply to GratefulThriver]

Perhaps the term 'low' meant your cancer was not highly influenced by HER2 protein? Do you have a written record of what was found at biopsy? I'd ask a straight question from your oncologist. Take a notebook and pen .... it helps get a no nonsense answer as they know you can quote their response in the future :)Xx

[GratefulThriver in reply to Andersl]

Thank you!! Yes!! 🧐

[Shelly1009]

I was on Enhertu for about 8 months. I just switched to Keytruda last month.

My side effects were fatigue, hair thinning and some nausea and constipation. The constipation is mainly for the first few days and is more related to the anti-nausea meds then the Enhertu. You usually gets some pre-meds like Zofran and dexamethasone that will keep the nausea at bay for the first few days. After that I was instructed to take anti-nausea meds the moment I felt even the slightest hint of nausea. I found that compazine worked best for me. I'd usually have to take it from days 4 to 7ish. Other than that I was able to work and function pretty well on this med. I found that I was really wiped out by the time I got home from work. I tried to get all my shopping, errands, meal prep and cleaning done on my days off so I could hit the couch after working.

I did end up having issues with my heart and anemia in about month 6. My repeat echo showed that my ejection fraction had dropped significantly. I had several blood transfusions and now take a beta blocker and blood pressure meds to ease the workload on my heart.

Good luck!!!! Hoping you get a nice long run out of this med.

[Andersl in reply to Shelly1009]

Thank you so much for your response. It's very helpful x

[Jhshl512]

Hi. I’ve had 3 infusions so far. The first was a breeze. I was only a little tired. The second, not so much. I vomited for 3 days. No anti nausea med worked. They then put me on steroids and I then felt like myself again. I just had my 3rd infusion and I am on a low dose of steroids so no vomiting!! YEA! I know everyone is different but I wanted to share my experience. I’m wishing you the best of luck. Let’s hope it works for all of us

[Andersl in reply to Jhshl512]

Thank you. I'll give this drug a good chance and see how it goes. My body wouldn't be abke to handle vomiting nor steroids due to a metabolic condition so it's good to be prepared on possible side effects and counter actions.Once again, my thanks x

[Ursula_I]

hello,

I've been on Enhertu for six months, it has done really well at reducing my brain lesions and is keeping the other tumours (extensive) under control.

For me the main s/e is brain fog for about a week after the infusion and more generalised tiredness (sometimes exhaustion) otherwise. I have terrible constipation anyway because of my pain meds (morphine) so I don't know if Enhertu has contributed to that. Also my hair has thinned a lot which I am sad about, I'm only 52 but look 20 years older 😫😭😬. But I'm alive! I'm hoping to stay on it a lot longer but of course it all depends on the scans 🤞

Good luck

Lucy

[Andersl in reply to Ursula_I]

I get brain lessons (twice treated with Gamma radiation) and lesions elsewhere eg liver and lungs.

So it's good to know it is controlling yours x