Anyone starting brand drug, Enhertu?
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First, rischaller, so encouraging to hear your PET scan results!
My update: I had 4th Enhertu infusion a week ago. I started at 80%; did well so increased to 100% for infusion #2 and #3. I had first CT scans a bit early after infusion #3. Results were "stable" - no shrinkage, but nothing grew and nothing new and no evidence of ILD interstitial lung disease. My labs were mostly stable - just a slight bump up for ALT & AST. After infusion #3 my foot neuropathy started to get worse, with some pain which was new for me, and since I'm a daily walker I decided to drop back to 80% for infusion #4. The NP I saw for infusion #4 said either decision was reasonable - i.e. stay at 100% and watch for worsening of neuropathy symptoms or drop to 80%. I stopped the Zofran as a premed due to constipation. Still getting Decadron as premed and at home on days 2, 3, 4. I have never had outright nausea so far and only slight queasiness which has responded to ginger. The fatigue however is noticeable. My worst days seem to be Days 5-7, by day 9 I'm being to feel better. I'm hoping infusion # 5 (May 21) goes as well as possible since I've planned a two day trip on days 6 & 7. I have my first post-infusion cardiac echo soon to check for any decrease in left ventricular function. Hopefully echo is stable. All in all the Enhertu seems to be working and I seem to be tolerating it pretty well. I'm so thankful.
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Hello all! Popping in over here since this thread was one of the main reasons I wound up actually joining BCO after a long time of just reading the threads.
I'm currently still on my first-line of treatment for Her2+, ER+ breast cancer, which is currently Phesgo, Ibrance, and Anastrazole. But, I know Enhertu will be my next stop.
My docs tried to get me enrolled in two different DESTINY studies for Enhertu, looking at the drug as a first-line vs chemo. My IHC was too low, but my FSH was too high to qualify for either the Her2+ trial OR the Her2Low trial of this particular test arm.
It had just hit big when I was rediagnosed as Stage IV, so I have loved reading everyone's experiences with Enhertu, good, bad, and otherwise, over the past 3 years. Thanks for being so willing to share. It has meant a lot to read first-hand stories from real people.
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..and for me too, love reading everyone’s stories, the good, bad, and otherwise. Grateful for the sharing.
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Welcome to the thread.
This month makes it 2 years for me on Enhertu with the last 15 months at the 80% dose and I’m happy to report that it’s going well. Even now, Enhertu is still inconsistent at times but it’s working great, so I’m not complaining… much.
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I've been getting 10mg Decadron as a premed and then 4mg at home day 2, 3, 4.
Anyone else getting this or something similar? Anyone not getting any corticosteroid as a premed?
I want to tapper off ASAP. I don't think I need it as I have not had outright nausea…some queasiness, but no nausea.
Just read about the bone fracture risk associated with a daily corticosteroid dose of 2.5m or greater. Can happen fairly quickly i.e w/i weeks.
I've also been on Zometa (bisphosphate) infusions for nearly 4 years. Long term use (some say greater than 5 years) is associated with spontaneous femoral and trochanter fractures. If taken along with corticosteroids the risk is greater.
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Winiwi,
Very interesting information about corticosteroids and the increased risk of fractures. My mother has been on verzenio/faslodex and also takes 2,5 ml hydrocortisone due to increased achte. Can you provide me the source of your information? Maybe I should ask her mo and unless she necessarily needs the daily dose of hydrocortisone maybe she had better stop it. She also has osteonecrossis of the jaw but this is may be not relaxant with the hydrocortisone. Thank you a lot.
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margarita12,
I just Googled corticosteroids and bone fractures and found several statements.
The specific information about bone fracture risk due to Zometa plus corticosteroids was from the Zometa package insert:
Here's the first sentence of the paragraph.
5.6 Atypical Subtrochanteric and Diaphyseal Femoral Fractures Atypical subtrochanteric and diaphyseal femoral fractures have been reported in patients receiving bisphosphonate therapy, including Zometa.
I also found this from New England Journal of Medicine about a study done on this topic:
https://www.nejm.org/doi/full/10.1056/NEJMoa1916525
If your mom isn't also on Zometa, then her risk situation would be different, but reading the package insert for the specific corticosteroid she takes might be the best place to look for fracture risk info. Hope this is helpful.
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weninwi, I only get the steroid premed, never anything to take at home. Also, I was on Xgeva (similar to zometa) for two years but I had planned dental work and need to stop for that. We discussed it and my MO determined that I was not a fracture risk and would not need to resume. Perhaps this is a good time for a review considering your concerns.
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Bone Scan after 5 infusions of Enhertu showed mixed results. Not sure if Enhertu is working or starting to fail. Anyone else get mixed results on bone lesions? Did you continue treatment?
My scan reads "Whole-body bone scintigraphy demonstrates no definite evidence of new sites of abnormal radiotracer uptake"...."However, there are several sites of interval increased extent and level of radiotracer uptake suspicious for worsening osseous metastatic disease involving T6, L1, L4 and left pubic bone".
My oncologist finally responded via MyChart with her opinion of the bone scan. Since last bone scan was in Nov and I started Enhertu in Feb she considers this bone scan a new baseline. She's reassured by the stable liver lesions so I will remain on Enhertu. Findings will be discussed further next infusion when I see PA.
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Hi all, its been so nice sharing with you and reading your stories. I will be leaving this thread as they are moving my treatment to Trodelvy starting next week. I had a new MRI last week because the skin lesions are growing and we wanted to check . And now the tumor has progressed as well, so we have to switch. Take care all wishing you all the best, and perhaps see you on other discussions!
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I am nervous. I had one cycle and am now have pangs of discomfort on my right side (liver, where I have lesions) and my back (where I have lesions). Eight years metastatic and I associate this discomfort with progression. My oncologist says I need to give this treatment three cycles before being evaluated.
I guess I am looking for stories from people with similar experiences, where they thought they were feeling progression initially on Enhertu, but ultimately had a good response.
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mikainsb,
I just completed infusion #8 at 80% dose. I keep tract of side effects and "pains" after each cycle and have had mild bone pain and also mild upper right and upper left abd pain. So far always mild and not long lasting, but I understand the anxiety that any pain causes.
My recent CT scans after 7 infusions (2nd set of scans since starting Enhertu) showed some liver lesions stable, some slightly smaller, nothing new. Bone lesions were considered stable. So Enhertu looks to be working. I'm repeatedly told "stable is good"
I think your oncologist is correct about waiting 3 cycles before scanning. Even after 3 cycles (i.e. 9 weeks) that's sooner than the usual every 3 months interval for scans. I had my first scans a bit early too.
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Found the thread so setting up shop. I'm on day 3 of first cycle and doing ok, better appetite than I've had and hoping this sorts out my problems so I can get back to living soon. I'll write more when not on phone, just had to bookmark.
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@sondraf good luck with the Enhertu. Sounds like you are managing it well ! Yeah. 👍 So glad Enhertu is working for you. Awesome news. I did well on it for 5 months before switching to Trodelvy, which so far is working well for me. Keep us posted.
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Hi all. Some of you I know and others I don’t. I thought I would join in since I’m going to be starting Enhertu Wednesday. @weninwi I’m glad Enhertu is still working for you. I got 9.5 months on Orserdu and now having to switch due to progression. I’ve missed seeing you in the Zoom meetings.
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That is AMAZING & exactly the results I'm hoping for from Enhertu!!!
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I was diagnosed ON my 40th birthday. Tumors in my right breast & axial lymph nodes tested positive. I underwent chemotherapy, bilateral mastectomy, more chemotherapy, reconstructive surgery, and got the all clear in 2013. November 2020 I felt a lump in my right underarm - more lymph node removal (positive biopsy) & radiation therapy, and again got the all clear - so changed my meds. 2021 a PET scan (2) vertebrae lit up so more radiation & drug therapy changes. July 2024 a PET scan showed some activity in my liver, which an MRI verified. I started Enhertu infusions August 14, 2024. I'm still a little unsure what to think or how to feel!! Should I get a second opinion from a more nationally known facility? What would that facility be? What side affects am I going to have? Thank you all for your experiences, very helpful 🙂
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@mguelff sorry to hear of your recurrence. It’s a lot to process over and over. Enhertu is a good drug and has worked really well for so many. You’ll find a lot of positive stories out there and on this thread. When I was on it, the side effects were minimal, some fatigue for a day or two. Sending good vibes and positive healing your way .
@kbl hope the start of Enhertu was smooth and you are feeling ok. Sometimes day 4 brings a bit of fatigue. Sending Hugs for the journey forward.
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@mguelff, if you’re HER2+ or HER2 low, then Enhertu would definitely be the protocol. A second opinion is good if you’re uneasy but I am treated at MD Anderson and they highly recommended this for me once it got FDA approval. Enhertu went from its trial to the 2nd line for HER2+ beating out several other medications. Its use has also been expanded to HER2 low and other cancers since trial and real life results have been so promising. I wish you excellent luck.
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@rlschaller Thank you! Day four is starting a little different. I’ve taken 2.5 mg of Olanzapine for two nights. I took two naps yesterday and slept 11 hours last night. Today I woke up feeling a little lopsided. It’s weird. I think I’m going to try to do it without it. I must be a lightweight. I’ll go back to the promethazine to see if it helps when or if I’m nauseous. The nausea hasn’t been too bad before taking the Olanzapine, so maybe I won’t need anything more this round.
I have been preparing myself to feel worse, but it hasn’t happened as of yet. I do feel a little weird this morning, so I’m going to lay low and nap when needed.
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@kbl not gonna lie, I am hurtin' pretty good at the moment in the hip tumor area and have moved up my pain management discussion next week. Appetite went out the window once I stopped the steroids and frankly I need some positive signs soon. Im encouraged by everyone's great results in the first three cycles, but given how this tumor hasnt responded to anything in so long (ALP is up again too which worries me, but not a lot) its just being a real dick right now and I need it to calm down as its not helping the swelling in my leg. Hopefully the lymph specialist tomorrow can get things under control on that front and that will help improve things a bit.
I have a thorax CT scan next Thursday - the chest lump will be in that field so maybe there will be some early indication there.
Today is my (counting infusion as Day 1) Day 11 and Im still pretty fatigued. Got a UTI, though, so dealing with that and the D from those pills hasnt been fun. Im so tired of being in various states of pain and discomfort its really really hard to be patient at this point because its been 16 months of ongoing deterioration and I am mentally and physically at the limit. They can amputate this side for all I care, at least I could get a bionic leg and walk!
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@sondraf I’m so sorry for what you’ve been going through. I hope the Enhertu can kick in, stop the side effects, and give you some quality time. I had been so prone to UTIs and have had so many over the years. It’s the one thing I never deal well with. There is nothing worse than that burning pain. I hope the meds help quickly for that. I totally understand not feeling well and having a UTI on top of it. I really hope you can get your hip pain under control.
I was taking Olanzapine for two days but had to stop. It was way too much for me, and I was like a zombie. I may try my promethazine instead.Please let me know if you get any relief this week. I’m thinking of you.
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Sondra, I’m sure the UTI it making this much more difficult too, hang in there.
I was hospitalized with extreme pain from a spinal tap problem a couple days before my first infusion, so I didn’t start out feeling 100% and I was miserable and questioned whether I could handle it at all but later infusions got much better.
Also, while I saw shrinking tumors early, it wasn’t until 3 scans (9 months for me), that everything resolved, so it can take some time. I’m sending my best good vibes your way 🙂
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Mae, I remember that seriously rough time you went through for like 9 months unable to swallow or speak and before you started Enhertu and hold on to that every day - that if Mae could make it through that (and look at her now!) I can hang on, stay positive, trust the process and believe this is going to work. The hip tumor is so large and intrusive to so many areas that even a little early shrinkage would be helpful.
I had a better night as my CBD rub really calmed things down and I was moving before bedtime and sitting in a different chair last night with better support. Need parents to bring more of that rub with them so I have a supply, it must just hit those surface nerves just right that the opiates dont. And my 4 am excursion to the kitchen for a cold pack and some coconut water didnt seem like a massive undertaking either. Maybe Im just chilled out now but thats a better state than straight anxiety!
@kbl Ive also woken up feeling a bit out of sorts, not often but some interesting dreams abound.
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KBL,
Just saw your post over at Enhertu facebook. You got a good run on ORSERDU! Hope you now do well on Enhertu. I've had 9 cycles so far, most at 80% dose. I take 10mg decadron oral just prior to infusion, and no zofran because it made me seriously constipated. I swing between constipation and mild diarrhea, but it's managable. Staying well hydrated helps.
In general, side effects have been mild for me. I've never had any nausea; some mild queasiness at the beginning but nothing now. Some mild night sweats, but that has also lessened. Fatigue was worse on days 5-10, but that has gotten less too. My hair has thinned, but it's not too noticeable. I get facial flushing from the decadron, so hope to reduce the dose. My neuropathy is a little worse. The third week of each cycle is my best week.
My last CT scans showed liver tumors stable and some were slightly smaller. CT of lung showed small area of ground glass, but the radiologist said it does not have the characteristic appearance of being drug-induced ILD. I hope the radiologist is correct. My bone lesions are stable according to the CT.
I don't have a port and didn't want one, but am reconsidering because my veins are starting to object to getting poked every three weeks.
The new challenge for me is that I developed a reaction to iodine, so now I can't get CT scans with contrast for the abdomen. I developed a bullous pemphigoid rash after stupidly trying a potassium iodine supplement for about 10 days only. My oncologist gave me two choices for my every 3 month scans: MRI of Abd and Chest CT (no contrast)……or PET scan. I will still get bone scans every 4 months regardless of choice. She explained MRI of abdomen gives better detail of liver lesions and Chest CT gives better detail for diagnosing ILD, so I made this choice. Now I have to deal with two tests every 3 months instead of one test, plus claustrophobia associated with the MRI scanner.
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@weninwi Hi! Thank you for letting me know how you’re doing. I kind of have some of the same symptoms you do, but it’s not the worst I’ve ever felt, at least not with infusion #1. The nausea comes and goes, but I also just had the 10mg steroid and nothing after. It didn’t mess with me too bad. Hair has been good, but I don’t know if that may be too soon to hope it won’t come out. I have such fine hair, I’m a little surprised it didn’t just drop. I’m definitely staying hydrated. Thank you for the tips.
I’ve had horrid hot flashes day and night since my partial hysterectomy in 2012, so I’m so used to them now, I wouldn’t know if it’s from a drug or not. It seems that they’ve actually calmed the last few days. I’ll take any relief possible.
I also get constipated from Zofran. They didn’t give me that, they gave me two different ones, one a longer lasting one. I was constipated, but three days of Miralax, and I’m moving again. That stuff works so good for me.
I’m sorry you have neuropathy. At this point, I haven’t had that. My sister was on gabapentin for neuropathy, and it stopped helping her. She just switched to Lyrica and is amazed at how much better she feels. She had horrid burning in her feet, and it’s gone. I’m not sure if that would be an option for you.
I’m also sorry you can’t have contrast any longer. That truly sucks you have to do two scans. So glad you are stable in other areas. I probably won’t scan for a long time because they just aren’t great at seeing any of my cancer. I’ll depend on tumor markers and how I’m feeling. My tumor markers on Orserdu went down five months in a row and went up four months in a row before I switched, and I was having symptoms again. Hopefully I’ll be on Enhertu for the long haul.Please keep me posted on how your next scans go. It’s so good to hear from you.
Kris
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