Enhertu

[Donna H]

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]

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]

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

[smim]

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]

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]

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]

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]

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]

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]

Just Enhertu plus premeds and at home anti nausea meds.

[Donna H]

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]

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]

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

[Nguyen]

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]

Hello,

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

Thanks.

[Donna H]

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]

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]

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]

Hello,

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

Thanks.

[smim]

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.

[Donna H]

I have bone mets and am on Enhertu - just had 11th treatment. Bone mets (left femur, spine and pelvis) are either stable or slightly reduced according to last scan. I have next scans on Oct 17th.

My oncologist lowered my dose yesterday in hopes to alleviate/reduce side effects. My side effects have gotten worse. And I am trying a 4 week cycle rather 3 week. All this can revert back if scans show progression.

From what Ive read, Enhertu looks to be very effective but there is minimal long term data.

[Nguyen]

Such a coincident, my wife has bone met in the exact same 3 areas as DonnaH, she also has lung mets. Next week would be our 5 months on Enhertu, tumor marker has been coming down fast the first 3 months, but slowing downward trend now. At best scans show stable bone (bone environment protects tumor), perhaps slight reduction in lung nodules.

The two supporting drugs, Palonosetron and Dexamethasone, cause additional problems. Dexamethasone causes jittery/hyper then insomnia the first 2-3 days after administration, followed by tiredness from lack of sleep. Palonosetron causes severe dizziness and tiredness. The two combines to cause her not able to function essentially for 2/3 of the days in between 3-week cycle.

The main purpose of Dexamethasone (a steroid) is to prevent allergic reaction and nausea. If you have no reaction after the first 2-3 cycles, discuss with your oncologist of reducing dexamethasone then eliminate it, if no problem with reduction. We started reduction Dexamethasone by half then eliminate it. Palonosetron main purpose is to prevent nausea, we use the same reduction method and eliminate it too. She is doing much better now without the two supporting drugs. Incidentally she is also on Zarzio, an immune system booster due to perpetually low count from all the years of continuous treatment.

Nguyen

[Nguyen]

Hello,

While under Enhertu regimen, does anyone get the chill in the middle of the night or nap that cause one to wake up? This happens almost everyday.

Thanks.

[Donna H]

I dont have chills as such but I am cold most of the time. I layer up like Im living in at the north pole.

I have been on Enhertu for over a year now. Crazy it has been so long. Last scans showed my tumors are stable so the plan is to stay on Enhertu as long as I remain stable and side effects are managable.

Is anyone else on Enhertu and if so how is it going?

[Nguyen]

My wife has been on Enhertu since May/2022. During the first 7 months her CA27.29 dropped very fast, but the last 3 Ca27.29 has been rising, we'll have scans next month to check status. Her Ca27.29 has been correlated 100% with imaging for the last 20+ years.

She has been on continuous treatment with trastuzumab (herceptin) or trastuzumab based (T-dm1, T-DxD, etc) regimens all these years. Her left ventricle ejection fraction (LVEF) and left ventricular global longitudinal strain (LV-GLS) had been in normal range. But they have just dropped out of normal range with this month echo cardiogram. Heart damage is a risk factor from Herceptin based regimens, since there are her2 receptors in the heart's cells and elsewhere. With the well known by-standers effect of T-Dxd (Enhertu), it affects the heart more. I hope you have echo cardiogram regularly.

Nguyen

[Donna H]

I get echos every 3 months, and I also get bone and ct scans every 3 months. So far the echos have always been good. The other scans have been stable since I started on Enhertu.

[Nguyen]

Donna,

Did you read your CT and bone scan reports? If yes, for the CT scan report did it specify the size of each tumor spot and indicate the size increase/decrease? With bone scan report, how did it conclude progression or not? It is much harder to determine progression with bone scan unless the change is very large or new location.