HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 01-24-2022, 11:56 AM   #1
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
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.
Donna H is offline   Reply With Quote
Old 01-25-2022, 12:11 PM   #2
lk1
Senior Member
 
lk1's Avatar
 
Join Date: Dec 2010
Posts: 46
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
lk1 is offline   Reply With Quote
Old 01-26-2022, 08:16 AM   #3
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
Re: Enhertu

Thanks. I'm not on facebook.....but I might have to join just for that.
Donna H is offline   Reply With Quote
Old 03-10-2022, 07:20 AM   #4
smim
Member
 
Join Date: Jan 2020
Posts: 15
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
smim is offline   Reply With Quote
Old 03-11-2022, 07:44 AM   #5
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
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.
Donna H is offline   Reply With Quote
Old 03-11-2022, 12:21 PM   #6
jacqueline1102
Senior Member
 
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
jacqueline1102 is offline   Reply With Quote
Old 03-12-2022, 03:00 AM   #7
smim
Member
 
Join Date: Jan 2020
Posts: 15
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
smim is offline   Reply With Quote
Old 03-12-2022, 03:09 AM   #8
smim
Member
 
Join Date: Jan 2020
Posts: 15
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
smim is offline   Reply With Quote
Old 05-13-2022, 10:03 AM   #9
Nguyen
Senior Member
 
Join Date: Nov 2005
Posts: 397
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
Nguyen is offline   Reply With Quote
Old 05-18-2022, 09:31 AM   #10
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
Re: Enhertu

Just Enhertu plus premeds and at home anti nausea meds.
Donna H is offline   Reply With Quote
Old 06-11-2022, 12:48 PM   #11
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
Re: Enhertu

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?
Donna H is offline   Reply With Quote
Old 06-12-2022, 02:57 AM   #12
smim
Member
 
Join Date: Jan 2020
Posts: 15
Re: Enhertu

Hi Donna
Iím on my 4th round. My body is adjusting a bit but itís 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 Iím unable to do all the things I want to, or used to be able to do in a day.
Iím enrolled in a trial, so Iíve had one scan after six weeks and another coming up next Tuesday. The first scan showed ďstableĒ. 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. Weíll 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 is offline   Reply With Quote
Old 06-12-2022, 02:59 AM   #13
smim
Member
 
Join Date: Jan 2020
Posts: 15
Re: Enhertu alone or incombination with ???

Iím also only on Enhertu (and a mix of drugs to curb the side effects)
I am ER+\HER2+
Smim
smim is offline   Reply With Quote
Old 06-12-2022, 03:23 PM   #14
Nguyen
Senior Member
 
Join Date: Nov 2005
Posts: 397
Re: Enhertu

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 is offline   Reply With Quote
Old 06-23-2022, 08:55 PM   #15
Nguyen
Senior Member
 
Join Date: Nov 2005
Posts: 397
Re: Enhertu

Hello,

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

Thanks.
Nguyen is offline   Reply With Quote
Old 07-11-2022, 12:32 PM   #16
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
Re: Enhertu

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.
Donna H is offline   Reply With Quote
Old 07-26-2022, 07:16 AM   #17
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Enhertu

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.
Rolepaul is offline   Reply With Quote
Old 07-27-2022, 01:26 PM   #18
Donna H
Senior Member
 
Join Date: May 2014
Posts: 295
Re: Enhertu

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.
Donna H is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 10:46 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2022, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter