Enhertu

Donna H · 01-24-2022, 11:56 AM

I had my first treatment with Enhertu on Friday. So far the side effects are minimal - I have a stomach ache and the usual fatigue. Of course, both could still be a result of the second Y90 radiation treatment I had at the beginning of the month. I will go back to the onc office this Friday for bloodwork and possible iv fluids. I am going on vacation in a couple weeks and the oncologist wants to make sure I am in the best possible shape to enjoy the trip. Typically, bloodwork isnt done the week after treatment with Enhertu. And there aren't Nuelasta shots with this either - so definitely not traditional chemo.

Anyone else on Enhertu? I'd love to hear your thoughts/experiences.

lk1 · 01-25-2022, 12:11 PM

Hi Donna, how r u doing? there is a great FB group u can joinspecifically for Enhertu. A lot of information and Many people on it

Donna H · 01-26-2022, 08:16 AM

Thanks. I'm not on facebook.....but I might have to join just for that.

smim · 03-10-2022, 07:20 AM

Hi Donna
I'll be starting on Enhertu soon. Unfortunately there are new lesions in my liver, after 2+ years NED following a liver resection. Have been swinging between hope and despair for a couple weeks. But now that the appointments are being fixed I can sense relief as well. Enhertu is not on the market yet in Europe, so I'm enrolling in the DESTINY 12 trial, which compares patients with and without brain mets. Everyone gets Enhertu and we all get a full screening before.
How can I find the enhertu facebook group? I'm also interested to here people's responses to the treatment.
smim

Donna H · 03-11-2022, 07:44 AM

Hi Smim-

I dont know how to access the group on facebook. I have never been a facebook user. I get treatment #3 next Friday. So far, the worst side effects have fatigue and constipation. And so far, I still have my hair.

jacqueline1102 · 03-11-2022, 12:21 PM

Hello Donna,

Here is the link

https://www.facebook.com/groups/478640293032630/

I am not on any social media with the exception of this group. I do not use my real name. This FB page is an excellent site with a ton of information and support.

Best wishes,

jackie

smim · 03-12-2022, 03:00 AM

Thanks Jacqueline!

@Donna: Nice to hear you've still got your hair. I was told about 1/3 lose it? but also that it sometimes comes back during treatment, and no idea if a cold cap would work.
I'll be starting end of the month. After an ungodly number of measurement exercises because it's a trial.

I've been on FB for a while now, but I don't post my cancer stories there. Totally anonymous on a forum like this is one thing; but having acquaintances and colleagues in on my most vulnerable issues ... i'm still not sure i'm ready for that.
But I am on a forum for metastatic breast cancer on facebook that's also "private" like the enhertu one. I'll be the only Enhertu user on that group.
The good thing about private FB groups is that the people in the group see only what you post in the group and your public profile- so there's a level of anonymity still
It took some getting used to, that I was "posting about cancer issues on facebook" - but it's really not the same as the usual facebook experience.

I hope the treatment works well for you both
smim

smim · 03-12-2022, 03:09 AM

ps i got let into the fb group quickly, and happy to say it does look like a busy and useful group
thanks again Jacqueline

Nguyen · 05-13-2022, 10:03 AM

Hello,

For you guys that are on Enhertu, are you on it alone or in combination with something else? If in combination, what is that "something else"?

Thanks,

Nguyen

Donna H · 05-18-2022, 09:31 AM

Just Enhertu plus premeds and at home anti nausea meds.

Donna H · 06-11-2022, 12:48 PM

I just had my 7th Enhertu yesterday. Felt really off last night - exceptionally tired - yet I woke up at 3:30 this morning! My dose and pre-meds have been adjusted to better manager side effects. I 'm still a work in progress. I get scans in early July to see how effective this new treatment is for me.

Anyone else on Enhertu? If so, how has it been going?

smim · 06-12-2022, 02:57 AM

Hi Donna
I’m on my 4th round. My body is adjusting a bit but it’s a pretty rough ride I find. The week before the next dose I feel wonderfully normal but the other two weeks are a combination of nausea and fatigue. I find I’m unable to do all the things I want to, or used to be able to do in a day.
I’m enrolled in a trial, so I’ve had one scan after six weeks and another coming up next Tuesday. The first scan showed “stable”. My doctor thinks it was too early to see much effect yet (I was happy with stable though). Curious what the next scan will show.
I would love a dose reduction if possible. We’ll see how things go, but I have to really plan my activities around the medication schedule. My previous perjeta&herceptine was much more accommodating
Cheers
Smim

smim · 06-12-2022, 02:59 AM

I’m also only on Enhertu (and a mix of drugs to curb the side effects)
I am ER+\HER2+
Smim

Nguyen · 06-12-2022, 03:23 PM

My wife just has her 2nd cycle of Enhertu. It's been rough (similar to SMIM), as much as chemo of old as expected since there is a nasty chemo component in it.

Nguyen

Nguyen · 06-23-2022, 08:55 PM

Hello,

Anyone experience skin color (hands in particular) change to a darker shade during Enhertu?

Thanks.

Donna H · 07-11-2022, 12:32 PM

Not my hands, but my eye lids have gotten darker - almost like I have eye shadow on when I dont (and not a very attractive color!!). My digestive tract is still having a difficult time adjusting. My stomach cramps up a lot and the system just isnt working as it should. Oncologist has adjusted dose and premeds trying to find the right combination - the practice of medicine. I am waiting for ct results to see how well Enhertu is working.

Rolepaul · 07-26-2022, 07:16 AM

So Nina is my wife. November 2009 they found brain Mets. Local Raleigh North Carolina Onc said she was done. We went to multiple cancer centers around the country and decided on MD Anderson Cancer Center in Houston. Surgical removal of 2 inch diameter by 1/4inch thick leptomeningeal cancer lesion. There were repeated new lesions despite radiation and chemo. December 2011 there were 25 to 30 tumors at the base of the spine. Nina was given 4 months to live. She became a leader in Intrathecal Herceptin into the cerebral spinal fluid. It was a game changer. Two spots never wanted to go away as they were deep in the brain. Kadcyla didn't work on those and neither did small molecule treatment. Nina started Enhertu in January 2022 and the lesions are being attacked. Small one is about half the size from 6 months ago. Larger one is showing higher blood flow but 30% smaller. For brain Mets, there might be a chance.

Donna H · 07-27-2022, 01:26 PM

Got my scan results. All look good - either stable or reduction in tumor size. I see my oncologist Friday to discuss in detail and get another treatment of Enhertu. BTW - I had to shave my head again. My hair started to fall out after 6th treatment. Still trying to manage the other side effects....but if treatment is working .... although some days are more difficult than others.

Nguyen · 08-31-2022, 07:00 AM

Hello,

Is anyone on Enhertu with bone met and knows (via imaging) Enhertu effectiveness (work or not work) against bone met?

Thanks.

smim · 09-16-2022, 12:25 AM

Enhertu stopped working for me after 8 rounds, unfortunately. I'm pretty much back to where I started 27 weeks ago in terms of tumor load - no new tumors, but those i had reduced noticably and in comparison to that reduction there's been significant growth in the last 6 weeks. as it was a trial i had 6-weekly scans. If I had less frequent scans, maybe they'd still call it "stable" - but whatever ..
It was my second line, so there's still a lot to try out. But can't say it's not a huge disappointment.