Anyone starting brand drug, Enhertu?
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I've had my last Enhertu infusion, due to progression in the liver (two new 1 cm spots). I had been planning on doing a couple more infusions while figuring out my next treatment, but had second thoughts about that today at the cancer center. I canceled the infusion and went straight home after my office visit. Why continue a tx that has stopped working?
My MO wasn't there, but she had given me three options for the next line: Piqray & Faslodex, Afinator/Aromasin, or Doxil. Since none of these show overall survival advantage, just PFS, I judged them by their side effects, and chose Doxil. The NP that I saw confirmed that it's hard to know which ones will work on pretreated cancers, and that my cancer has not yet met an anthracycline. I said, "then I hope they get along like a house on fire."
Sigh. Well, here's to no chemo side effects for the next three weeks. I'll use the time to get ready for the next assault.
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Ninetwelve….sorry to hear about the recent progression. It just plain sucks. I hope you get some longevity on your next treatment, and that the side effects are manageable. 🤞
I’m on day 15 of cycle 2, and overall it was better than cycle 1. Days 7 and 8 were a bit iffy, but definitely not as bad as my worst days of cycle 1. I think staying ahead of the nausea with nightly Olanzapine made a difference. I took it every night before bed from day 2 to day 9. Haven’t needed it since then.
My hair is really “thinning”. I’m losing handfuls when I wash it, and it just sheds like crazy. I’m hoping it levels off, but if not, I’ll figure it out. This is the first time in the 6 years since my De Novo diagnosis that I’ve lost any hair. It thinned a bit on Kisqali/Letrozole in the beginning, but filled back in after a while. I know in the big scheme of things it’s just hair, but it’s still a bit upsetting.Will have my first scan on Enhertu on July 13th. Hope it’s doing the trick.
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Thanks, missmonty. I had constant queasiness on Enhertu. My MO added lorazepam to my other anti-nausea meds. I took that one at night, and it helped with the "morning sickness" that I would get throughout the month, due to having an empty stomach. Acupuncture helped as well. And magnesium supplements for the constipation, which made nausea worse.
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Does anyone know if having FGFR1 mutation makes Enhertu work better? > Cure-ious??
I am hearing that having ESR1 does make it more effective , I don't believe I have that one.
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Hi all, first time poster. Unfortunately new to this group. De novo, triple positive, multiple large spots to the liver and one on the spine. I feel like I’ve read every thread in this group and this seriously seems like an amazing group of people. I’m struggling to really be able to talk to anyone close in my life since well, no one else can relate. Been a whirlwind of emotions for my husband and I. Only 29 so was not expecting this to be our life but glad I found you all.
Commenting here because my oncologist wants to start me with Enhertu. She says it just very recently became approved to be used as a first line of defense and is optimistic about it. I haven’t been able to find a single example of anyone using it first, wondering if it’s really just that new to use first or if I should be talking to her about starting with something else. It really sounds like there’s so many different “orders” of meds / chemo people use it’s just a little scary I can’t find anyone starting with this first.
-Bobbi Jo
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Hi nicolerod. I have the FGFR1 mutation. Enhertu worked for four months. First scan showed "apparent positive treatment effect" and second scan at seven months showed two new 1 cm liver lesions.
Bobbi Jo, I'm sorry you have to be here, and at such a young age. Enhertu is pretty new. Most of us have been around awhile and started on antihormonals. I would definitely voice my concerns here to my oncologist, and maybe get a second opinion. You need to be comfortable in your treatment decision, and that can be hard to do when you're one of the pioneers in a new treatment line.
By the way, I hear you on the struggle to relate to healthy people. They have no idea what we're going through, and they're our friends. We wouldn't want them to ever know firsthand what this is like. But we still want to be heard and understood. That's why I've been coming here, for nearly nine years, with my questions, hopes and fears. It is a great group of people, whom I've been honored to know.
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Hi ninetwelve thank you so much for the response! I agree it sounds really common with this group to always get second opinions. I did a lot of research choosing this team as they’re considered one of the best especially in my area, but sounds like second opinions are super important. I also just want to get started on something right away because this waiting to be treated is stressing me out more than anything it seems lol. Sounds like their plan for me would be to stay on this until it, hopefully, gives a great response and then move to Herceptin. Will definitely follow up with my oncologist with my concerns.
And absolutely agree I’m so so glad none of my loved ones can’t relate to what I’m going through. Even seeing my husband taking it harder than me and breaking the news to some of my closest friends and seeing their reactions was enough for me to realize it’s probably best to share the concerns and “reality of the situation” of it all with a group of people who truly understand. So glad to find you guys.
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Moving to treatment in a timely manner is important, but make sure you understand what your treatment is going to be. Ask questions, speak to a Nurse Navigator, if need be, get supplies* and prepare for the common side effects, and then relax and let the meds work. You got this!
Also, if you haven't already, check out the thread on Stage IV De Novo. It's a bit different from cancer that progressed from a diagnosed earlier stage. Welcome, and again, I'm so sorry you have to be here.
*I like Calm Magnesium gummies for the constipation these meds can cause. They were a gamechanger for me.
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All very good points! I feel like I’ve researched so much yet know so little still haha. Love the tip of the calm magnesium gummies, really appreciate it.
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@ , if you haven't had to know this information, most people don't. I just think lucky them. You are so young that most of your friends will not have dealt with these kinds of issues, even with their parents. I'm in my sixties with many friends older than I am. While they didn't understand MBC, they do understand "replacement parts" and heart problems. I think this makes it especially more difficult for you and I'm sorry. Keep reading and posting anytime you feel like it. And yes you will be more relaxed when you get a treatment started. Best wishes
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Thank you so much @nopink2019 I appreciate the best wishes. And I’m very thankful to have this space with you all!
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I had a much anticipated CT scan today. My liver showed fuzzies, but nothing definitive as to whether it was too much growth or dying cancer cells. So I'm sticking with this drug for another few months. MO called it stable. That was wonderful news to me as I feel like I'm running out of options here. So I'll keep on this and Hope I can remain in this situation for a while longer
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nopink , good news that your MO called you stable, long may you continue successfully on Enhertu.
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No pink …thats great news. Happy for you. I have been having a bit of a rough time with it..and to be honest I am freightened that not only is it not working bc I still feel my same liver tumor pain in same spot that i have always had..but also of what my bilirubin is going to be this week when I get it checked. day before infusion it was 0.8 and 4 days after infusion it was 2.0!! Not looking good for me.
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I am ready for my fifth treatment of Enhertu. My onc does a half hour
anti nausea IV drip before Enhertu. My body's reaction is severe
constipation. So for the 4th treatment I requested a different
anti-nausea medicine. Guess what my side effect was? Severe diarrhea.
Before I go back to the first anti nausea iv drip, is there anyone who
doesn't get nausea? I have never had nausea with Ibrance, Verzenio,
Affinator, Xeloda. Maybe I should not take the anti nausea drip.
Lowering my dosage is not an option. I have always taken full doses of
my medicine. I am in year 4, de novo, bone mets only in the usual spots,
but so far I can't feel them! Thanks for the advice. I am Francie in the MBC Zoom group on Mondays.0 -
Hi Francie! I had success with promethazine aka raglan, an old antihistamine and lemon ginger tea (both fresh, steep the ginger and add lemon) for breakthrough nausea.
Edited to add that I don’t get a drip, just an acid reducer and steroid premeds.
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Hi Francie,
I just had my 3rd treatment yesterday. I do get mild nausea. My pre-meds are taken in pill form. 16mg ondansetron amd 8mg Dexamethasone. Not sure if the constipation would be any better with the pills. I start taking a stool softener the evening of treatment and take that for a few days. Seems to help. And I eat a lot of fibre.
I do know that a few fellow posters on this topic have stopped taking the pre-meds and have felt OK.
Hopefully you find something that works.
Anna
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Hi Francie,
I take oral pre-meds, 16 mg of Zofran and 12 mg of Dexamethasone. I no longer get nausea once I am home, did used to use Zofran at home and ginger. Even without the home zofran, I get constipation- I eat fiber, take daily colace and drink smooth move tea. If it continues I add Senna pills as needed. I did have one cycle with diarrhea and took one Imodium and it stopped. Seems like every cycle is a little different.
I have never tried to go without the pre-meds- I may try lowering the steroids since sleep is an issue.
Hope you find the right combination
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Hi Francie, I'm on #7 treatment. What is in the anti nausea drip they give you-I'm guessing zofran? I am sensitive to zofran (ondansetron) so I only take one 8 mg pill (instead of two pills that are suggested) before as well as just 2 dexamethasone pills (I cut it down from 3 to help me sleep better). I immediately take 2 Senna that night. The next few days are dependent on how I am feeling.-I'll take a zofran the next morning. I have 4mg zofran I can use to help with nausea as needed and not have the constipation that a 8 mg zofran would bring. The Senna is used, 2 in morning and/or evening to help with the constipation (I balance that with 1/2 immodium if needed). I find on it's own, Enhertu can give you/me loose stools near the end of my cycle, which eventually finds its way after side effect meds are finished.
I would ask for pills instead of an infusion so you can monitor the amount that works for you. Don't be afraid to ask if you think it will make a difference. Find out first what is in the drip. Good Luck
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Saw MO Friday. Enhertu has shown no improvement to liver, very bloated abdomen & no appetite. Referred to hospice. Best wishes to all & I hope you get long results from your treatments.
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Nopink2019- I am sorry that enhertu did not help you- I wish you peace and bodily comfort and much support in Hospice. I have so enjoyed your support and input over the years.
Hugs to you.
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nopink,
I'm so sorry Enhertu was not effective for you. I've appreciated reading and following your comments. You'll be in my thoughts and prayers.
ninaca,
I'm curious why you choose to use senna for constipation? I've used it in the long distant past, but more recently have used miralax. Is senna gentler for you or some other reason? I'm not on Enhertu yet, but expect it will be in my future at some point.
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I find Phillips pills gentle but effective
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nopink I am so sorry Enhertu was not effective for you. I don’t have words… I just prayed for you and my family did too. You have been so kind and helpful in the short time I have been on this thread I pray you have comfort and God’s peace. Sending you love and hugs.
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nopink, I'm so sorry to hear this. Wishing you gentle peace and love in your move to hospice.
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Im off already…. bilirubin back up liver pain back stopped. Good luck to you all
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Hi all — haven't posted in a while. Very sorry to hear about those of you for whom Enhertu has not worked. I started Enhertu back in Nov. 2022 and just had my 12th infusion today. Had scans last week that showed stable liver mets (maybe even a very little bit of shrinkage), so we stay the course for now, as my MO says, and will likely do scans again in about 3 mos. I do not get any pre-meds before my infusion — I had terrible constipation early on after first 2 rounds so I stopped the pre-meds — have not had any issues. My hair thinned a lot early on, but now it has stopped thinning and there are some little tufts of new growth poking through what was left. I have some fatigue, but it comes and goes. My appetite comes and goes as well, but I have not lost as much weight as I did on everolimus (that was not a good Tx for me). For anyone new to this, feel free to ask any questions and I'll try to answer based on my experience so far.
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Weninwi- I don't know if Senna is gentler than anything else, its just something that is working for me with this drug. I use it sparingly, if I haven't had a movement that day I take 2 at night, until I do have a movement. There is this balance of keeping it from heading into diarrhea. Every time I take a zofran for the nausea (I only take 4mg) I wait to see if I'll be needing something the next night. Every day is different until the last week when I'm usually quite normal again. If Miralax worked for you try it first. Hope this helps.
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pirate_girl,
Thanks for your update. So no steroids either as a pre or post med? Would you consider posting your dx, genetics, treatments, etc under your signature?
ninaca and others,
Thanks for sharing your updates and info on side effects you've experienced and antidotes….also length of treatment. The range of side effects is remarkable.
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Weninwi - I do not take any pre or post meds / no steroids / no anti-nausea - as we all know, everyone responds differently to these treatments so for some, the pre or post meds may be tolerable and may provide relief, but not for me. But if someone is having issues that can be traced to those pre / post meds, I want them to know it’s possible to go without and be ok.
As for my diagnosis, etc., I still haven’t figured out the new website so haven’t updated things, but short rundown is as follows: ER/PR+; HER2 low (+1 or +2 depending on which biopsy you look at); PIK3CA showed up in liquid biopsy; Tx has been Ibrance/letrozole; Verzenio/fulvestrant; Piqray/fulvestrant; everolimus/fulvestrant; capecitabine; and now Enhertu.0
