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Old 01-24-2022, 11:56 AM   #1
Donna H
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Join Date: May 2014
Posts: 292
Enhertu

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.
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Old 01-25-2022, 12:11 PM   #2
lk1
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Re: Enhertu

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
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Old 01-26-2022, 08:16 AM   #3
Donna H
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Re: Enhertu

Thanks. I'm not on facebook.....but I might have to join just for that.
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Old 03-10-2022, 07:20 AM   #4
smim
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Re: Enhertu

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
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Old 03-11-2022, 07:44 AM   #5
Donna H
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Join Date: May 2014
Posts: 292
Re: Enhertu

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.
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Old 03-11-2022, 12:21 PM   #6
jacqueline1102
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Join Date: Apr 2012
Posts: 183
Re: Enhertu

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
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 03-12-2022, 03:00 AM   #7
smim
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Re: Enhertu

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
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Old 03-12-2022, 03:09 AM   #8
smim
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Re: Enhertu

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
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Old 05-13-2022, 10:03 AM   #9
Nguyen
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Join Date: Nov 2005
Posts: 382
Enhertu alone or incombination with ???

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
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Old 05-18-2022, 09:31 AM   #10
Donna H
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Join Date: May 2014
Posts: 292
Re: Enhertu

Just Enhertu plus premeds and at home anti nausea meds.
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