Anyone starting brand drug, Enhertu?
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DL3!
Yes! I was on Kadcyla & it bought me a coupla years. Enhertu is my 8th line of treatment. Let's see:
- Herceptin/Taxol for 56 weeks straight Dec.2010 to Jan 2012
- Tamoxifen & Herceptin
- Arimidex, Faslodex (I call the Faslodex "butt shots" - these didn't work at ALL for me, though my insurance dickered at $1500 apiece (their error) & finally they read my contract - $125/session
- Taxotere
- Kadcyla
- Doxil & Herceptin w/ a Perjeta chaser
- Xeloda (June 2019 for 9 days only - epic fail! landed me in the burn unit of the ER overnight)
- Enhertu
I've been kept alive here (by God's kindness) for going on 10 years metastatic. De Novo mets to liver, mets to lungs, brain. Not sure why I'm so excited, but I am. I am here, kicking & keeping it going.
The Lord has indeed been good to me.
Best to all of you!
Miriam
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Interstitial Lung Disease side effect - https://www.youtube.com/watch?time_continue=19&v=0MfiGUwgHWI&feature=emb_logo
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Day 15 - finally getting some energy back, but drinking green tea may be responsible for that. (I'm extremely sensitive to stimulants) Coughing is slightly less so perhaps the ping pong ball sized lung mets is getting smaller. I don't hear the night time wheezing like I had only about 15 days ago.
I suspect my WBC is finally going back to normal levels; I will have blood work done on 4/3 (this Friday) to determine my CBC in time for next Tuesday's 2nd Enhertu infusion.
One week until I receive Infusion #2!
Miriam
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Miriam,
First, thanks from all of us for real-time sharing your experiences with this new drug -- we're sure it will be helpful for many, many others in the future as this medication becomes more popular.
In addition to the helpful links you've shared (including from Breastcancer.org's own Drug List page on Enhertu), we wanted to share the more extensive page from the Targeted Therapy section on Enhertu which goes into much more detail about what to expect and who it's for.
We hope this info is helpful to you and others who join your journey! And we are so happy to hear it's working so well for you! Thanks again for sharing.
--The Mods
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Day 18 - everything continues to seem the same. Had my blood work done this morning and will post the results once known. I expect that my WBC has climbed back to near normal.
No nausea to report whatsoever. Coughing is still an issue but I do believe that the nighttime wheezing has disappeared.
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Thanks again for keeping us up to date Miriam! I am currently only on Herceptin and Faslodex, after another stint with chemo last year following first progression...but hoping Enhurtu will be available in my country in the near future.
God's richest blessings
Nula
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Update:
Day 21. No worries, no nausea, prunes work great to "fix" constipation, which may be residual from Herceptin/Perjeta TX I had been on since August. BTW, I stopped all chemo while our son and his sweet little wife were getting married (November 2019 - I will put a photo below - Elisabeth, me, Kristen, Andy,
Tom, Timon - our 2 grown children were also in the wedding).News for the day, though. My WBC is low. Had labs on Friday (4/3) & today Fox Chase Cancer Ctr.'s infusion nurse, Nick, called to say they want to delay TX by 1 week. So I will go on 4/14 for Infusion #2.
I'm not too bothered by this, apart from having to reschedule everything. They need a fresh CBC this Friday to ensure I'm back up enough.
Will report once I know. Hugs to all of you wonderful ladies!
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Taking advantage of the situation.
Andy & Kristen got married just south of Poughkeepsie, NY. That's about 2-1/2 hours north of us, just west of NYC. We rented a big old house up there & invited all of these folks (Andy's cousins & their spouses) to come & stay with us. I think everyone had a lovely time, as you can see from the below (photo booth) pics.
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and one of just the 2 of them. They are very well suited to each other...
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Nice family! And congratulations to the beautiful couple!
The Mods
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I started Enhertu two weeks ago on Thursday, 3/19 and I'll keep updating my experience here. I had progression after 6 months on Kadcyla, so after looking at clinical trials, we decided to go with Enhertu.
So far my side effects have been much worse with Enhertu than with Kadcyla. I was really lucky with Kadcyla and had almost no side effects. With Enhertu, I have fatigue to the point that I'm on the couch most of the day, although the last couple of days have been better. And I have nausea, which has never been an issue with my previous treatments. The nausea was just an inconvenience, but it reminded me of morning sickness and lasted about 9 or 10 days after treatment. And I had constipation, which I also had on Kadcyla.
If I had to rate how I felt overall on my various treatments on a scale of 1-10, I was a 0 on TCHP (miserable with terrible GI side effects), about a 6 on HP (still with the GI side effects from the Perjeta) and about a 9 on Kadcyla (a little fatigue, a few days of constipation, and had started having neuropathy in my toes). I would say the first week after my Enhertu treatment I was a 4 due to the fatigue and nausea, and the last few days I've been more like a 6 or 7. I'm hoping for a good week before I have my next treatment, and I'll probably ask for a dose reduction to hopefully get a better quality of life for the first 10 days after treatment.
Thanks to everyone else posting their experiences.
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Thanks, Rachel;
Hoping and praying that you, like so many others, do well with this drug in spite of serious nausea. For the constipation, prunes are excellent for my GI tract. Wish I had thought of them during just Herceptin/Perjeta days (August 2019 to late Feb 2020).
One of the ladies on here alerted me to a really helpful Facebook site for Enhertu. It's been a very valuable resource. Lisa, on that site, has been on the clinical trial for this drug for 2 years with really good success. If you use Facebook, check that out.
Blessings, Rachel.
Miriam
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thank you so MUCH for all the info you provided on Enhertu EMAW ..did you change user name from miriam ? I have been reading all the links you hae shared.
How do you feel with your lungs as I see this has been addressed in some of the links and to watch carefully . as I have a lung met which I think has decreased much but now shows scaring.
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Yes, DL3;;
It's me, Miriam. The Mods told me my user name too closely resembled my real name. Well, I wasn't being too clever when I set things up & I really don't think I care who knows my real name, LOL. In fact, I prefer it.
Sorry to hear of the scarring from your lung mets. That's more tolerable, I hope, than a sizeable tumor there? I don't know what chemo might do to affect that but I think your Onc should know what to do.
My coughing has slightly subsided, I believe. One thing that has definitely improved is that wheezing I was doing at night while sleeping. It wasn't loud or disruptive but I could hear it at times. I don't know why that stopped but it's a good sign.
I'm still very stoked about Enhertu. Here's the Facebook page for anybody that wants to read up on Enhertu there: https://www.facebook.com/search/top/?q=enhertu%20(ds-8201a)&epa=SEARCH_BOX & see Lisa Booth's posts since they are really exciting.
Blessings to all of you ladies duking it out in the trenches,
Miriam
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Hello EMAW,
I had my lung met radiated. at the time i was advised it could look worse than better for while. so when had scan before last that, I almost positive that is why my met looked larger because of rads. i really not sure if scarring or what. however it was addressed to me prior to radation that scarring can happen. anyway last scan showed lung met smaller but i think it was more scarring gone down or irritation from rads. i had some wheezing before going on xeloda this is now gone. i am supposed to have scans in 2 or 3 weeks but onc may post phone do to the virus. this xeloda is brutal the hand foot symdrome is NO joke. i really dont want to switch unless we see growth or changes etc. I am following this thread very close because I know i will choose this as my next drug My onc gives me choices and we then decide/discuss but I am a researcher. funny i can still remember sharing with him about the DS-8201 was in trial and now... here it is Enhertu!
I did TCHP chemos
Kadcyla (18 months)
Tykerb only (16months)
xeloda started (Nov 2019)
You take care. God Bless all of us.
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JL3,
sorry for my slow response. (had to change my password so I could get back logged in).
Will send more later as I’m in bed now, trying to type & fatigue from Tuesday’s infusion starting to slow me down.
Glad the Xeloda worked for you so well for a time, at least to clean up the wheezing. Xeloda is strong. I was allergic to it, but Fox Chase is a heavy hitter & I sometimes suspect goes too heavy on dosages.
Come over to Enhertu!
be back soon!
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Sorry, DL3 for using your name incorrectly,
I do hope your lung scarring is regressing. I have had brain radiation, but uncertain about scarring issues. I th8nk, if you can tolerate the HFS from Xeloda for a bit longer, it is wise to get everything you can from that drug until it stops working. But it’s a destructive drug & VERY hard on the body.
Enhertu Day 6, Inf.#2
Fatigue on Friday & Saturday (days 4 & 5) made it difficult to do much except rest. Moving around to do much somewhat limited. No nausea. I think the Pre Meds are largely responsible for the lack of nausea I’m experiencing. Pre Meds are Aloxi with 10-mg Dexamethasone followed by Emend.
Constipation is an issue, which I resolve by eating with prunes, which I love (for now).
A lot of women are experiencing nausea but I suspect these hospitals don’t do the right Pre Meds. 9nce you transfer over to Enhertu, try to insist they give you the pre meds that MSK used in the clinical trial, phase 1.
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EMAW,
yes I am going to stick with xeloda as long as I can. i had scans couple days ago so we shall see. other than the HFS, very dry mouth i am feeling good.
How are you?
How are you other ladies doing on Enhertu?
God Bless each of us.
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I seem to be largely unaffected by the supposed SE's on this drug.
Apart from fatigue (yes, it's a big fatigue!), I am a tiny bit constipated, and now experiencing a small amount of hair thinning.
Otherwise, it's pretty good. Just gotta get accustomed to low energy after Day 4 or 5.
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hi ladies
I just started Enhertu 15 days ago. I don't usually do these boards because they sorta spook me when people talk about all the bad stuff, so be gentle with me I'm a novice!
. Because I had also had some other health issues when I switched to this it's been tough to pin point if the fatigue was Enhertu or the anemia recovery; or the cough was Enhertu or the lingering Pneumonia...so I can't comment solidly on those bits - yet. But what I did find yesterday was hair thinning is surely Enhertu.
My question is....would cold caps work for something like Enhertu??? And I thought I read somewhere that side effects may reduce over time with Enhertu. Anyone else read that? Would that mean the hair loss might just be an episode here and not forever???
We are all learning here I guess
thanksErin
oh and y'all have all these history details, don't know how to do that. In short:2015 DX: sept 2015 stage 3 IDC Triple + .
2016: chemo, mastectomy and radiation plus Herceptin/Hormone blockers. Result NED
2017: Mets DX: HER2 And ER+, PR-. aug 2016 in bone small spots 3 spots all smaller than 1 cm. Chemo. Result: NED.
2018: Kadcyla for maintenance. Progressed on treatment in lung then brain. radiation to lung, gamma knife for brain. Lung spots all smaller than 1 cm. Brain spots smaller than 2mm. Started Lap/Cap
2019: Lap/Cap continues. Result NED.
2020: Lap/Cap started to fail, 3 small lung spots under 1 cm. Started Enhertu
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Welcome, Erinjb! We're sorry you find yourself here, but we're so glad you've joined our community. We hope you find this to be a supportive, informative place as you continue down this road. We're sure other stage 4 and mets members will chime in with their experiences with the side effects you mentioned - we know how helpful it is to hear from others in your position!
Also, here is our content section on Enhertu, in case it could be helpful.
The Mods0 -
Hi, Erin;
Hair thinning is different for everyone. If you do Facebook, there is a page there for Enhertu users. There are discussions on the cold caps (I don't do them) if you search in the search box. It's a much more active site but you should only look for the specifics you need (if you do FB).
I have no nausea but I attribute that to Fox Chase Cancer Ctr. using the correct pre meds.
(I've had this mets for almost 10 years & I'm still working through it - if you want, we can PM so I'll go "friend" you here now.
Miriam
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Hi Ladies,
I wanted to post a good-news update. After three rounds of Enhertu, I had a PET scan and my doctor just called to tell me that 4 of my nodules are gone and the last one is smaller and not active. Woo hoo! I was so scared to get my hopes up since every other treatment has been a disappointment. I'll see him tomorrow to get the full report and have my fourth treatment.
And Erin, I had some hair thinning starting after round two, but it seems to have stopped now and my hair still looks "normal." I was worried that it was all going to fall out again, but it doesn't look like it as of now. Fingers crossed. It started growing back when I finished CTHP in August 2108, so it's still really short! I am still hoping to have long hair again one of these days.
I hope this drug is as effective for you ladies as well!
Rachel
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Hi all!
I started on Enhertu as part of the Destiny Breast-02 trial in Feb this year. (I'm in London and this is the only way to access the drug here). I'm so glad to have found some other people on the drug as I'm curious how others are doing on it.
I previously had H+P and Kadcyla and felt absolutely fine on both. On Enhertu it's been very up and down.
The first cycle I had a lot of nausea, the second I didn't but instead I had severe fatigue. The third I lost my appetite and felt incredibly weak, the fourth I felt better but had a lot of feeling of fullness after eating. I also had a very upset stomach. The fifth I finally got some control over side effects. Still have a lot of fullness and reduced appetite but energy levels more normal. New symptom has been an intermittent searing pain between abdominal wall and abdominal muscles. Doctor isn't sure what it could be due to. It feels like there's acid eating away at me when it happens. Very strange. I've also lost about 60-70% of my hair so have resorted to shaving it off. And I've gone into menopause as well (I'm 30 pre-menopausal) - which is not meant to happen on this treatment.
On the upside the treatment is working. After 2 cycles my tumours reduced in size by 20% which was disappointing and had my doctor worried. His other patients had 50% reduction after 2 cycles. However after 4 cycles I had a total of 60% reduction in tumour size. We were all very pleasantly surprised.
Anyone else here experienced that?
Wondering if it could be a delayed response type of situation. I'm wracking my brain for anything else it could be. I don't think I did much differently between the cycles, other than giving up my vegan wfpb diet after 2 cycles as the lack of appetite and nausea meant I developed aversions to what I used to eat. Instead I resorted to take outs and ready meals. Things I would have expected to give me a worse outcome from treatment..
I have another scan in 3 weeks so hoping for further large reduction in size.
Hoping you're all well!
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Hello, Loupita,
I would encourage everyone who has Facebook, especially those in the UK, to go to the Enhertu site there as well. There are now about 3 or so from the UK on clinical trials, so you can share info as to their efficacy.
There are over 175 members on that site, & I've found it a good place to compare notes. This is still a good place, though. I've just had TX#4 this past Tuesday (June 2nd) & I'm doing well. Haven't posted here as this page doesn't have many followers (yet!) & my experience has been rather boring - no nausea! How did that happen, I don't know. And my scans are on June 18th, so that will be my first "real" look. Currently, the coughing and wheezing I'd experienced (4x4 cm tumor in my lungs) has stopped, so we believe it's working. However, I DO have to have Neulasta for the first time.
Loupita, some of the ladies on the Facebook Enhertu site have similar responses to what you describe. Some couldn't handle the drug's SE's.
I've been told that in the UK, pre meds aren't being given on the Destiny Breast 02 trial?
This drug is a tough one, as, if you've experienced the other ADC Kadcyla, its chemo component (Emtansine) is less harsh. The Deruxtican in this Enhertu is good, in that it hits bystander cells, which may have smaller HER2+ amounts (which eventually may make trouble).
Look for me over at Facebook, Loupita. You will find that there are about 4 other girls on the CT's in the UK, trading info with each other.
Looking forward to talking further with you.
Kind regards to you,
Miriam
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Hi there, Florida Rachel;
Welcome! As I just told Loupita, this site is rather slim on followers compared to the site at Facebook (https://www.facebook.com/groups/478640293032630/).
Erin, who posted above, is also over there as well.
And the girls over there need to hear your good news. Some of them are really struggling through nausea & its related issues. It's a fatiguing drug; we're all encouraging each other there.
And so happy for you!
Kind regards,
Miriam
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June 30th & I've had 5 of these treatments.
Yes on the hair thinning, yes on the constipation, but a big NO for me on nausea, and it may be due to how my Oncologists are NOT following the Enhertu packaging instructions but instead the pre meds that MSK (Memorial Sloane Kettering) used on the Destiny Breast 01 trial: Emend, Aloxi with Dexamethasone, and then nothing else. Some are using Zofran or Compezine with mixed results for nausea.
On June 18th, I just had EXCELLENT SCANS & they show a huge reduction in tumor load!
So, this drug is tough but stick it out. More & more studies coming out as the clinical data comes out that this is a highly effective (high toxicity) drug.
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Dear all, wow, what a database on Enhertu I found here. So happy for you who benefit from this drug. Hopefully it is in Europe soon. All the best and wishing pCRs for everyone of you who is on this drug. Saulius
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Hi Miriam, wow so glad that the treatment is working! I am currently on Kadcyla, only had three infusions so far, and it also seems to be working based on tumor markers...I see you were also on Kadcyla, how long did it work for you? I'm so grateful Enhertu is available for down the line!
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