Anyone starting brand drug, Enhertu?
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Hi, I was about to start treatment #14, when I got a call not to come in for chemo. My PET scan showed the start of drug-related interstitial lung disease. Has anyone had this? It is a side effect from Enhertu. I am now on 20 mg of prednisone for a month, then tapering off for a month until I can start Enhertu again at a lower dose. Supposedly you can recover easily from Grade 1- make sure to get scans regularly. I did not have any symptoms so glad is was found and dealt with immediately. I picked up meds and started the day I got the call. No avid uptake of cancer on PET scan. The drug has been good to me.
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ninaca,
Thanks for the update on your good response to Enhertu and the early detection of interstitial lung disease. Good to be aware of this s/e and importance of quick action. I haven't started yet but expect it will be in my future. So paying attention to the experiences of others.
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Hi all, Im diagnose with Br Ca in 2011 and had WLE+Ac, then recurrence with total mastectomy and later with another recurrence to mediastinum and neck nodes. On taxotere and got well. Now having brain mets. Am wondering had anyone on 4.4mg/kg of Enhertu since the 1st infusion and subsequent infusion? Did it give a good result?
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@ran5055, welcome to Breastcancer.org. We're sorry you had to find us, but glad you did! Our community is filled with incredible individuals who may have gone through similar treatments, so we hope you get some answers to your questions soon. In the meantime, here are other discussions and resources that you may find helpful:
Also, check out our Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.
Warmly,
The Mods
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Ran5055, I’m on 4.4 but not since the first infusion. I got the dose reduction after 9 months at 100% but I’m happy to report that I’ve have great results in the brain at the lowered dose and am currently showing now active cancer in brain or body.
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illimae-I hope you meant to write "showing NO active cancer." instead Now active cancer. I will be getting a reduction, 4/4, when I go back on after time off for ILD side effect (interstitial lung disease). On prednisone at the moment, just found am all clear on CT scan so I can go back on Chemo in two weeks. Good to know you continue to get good results at the reduced dosage. Didn't want to go back on full dosage to then get ILD again.
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Ninaca, yes, no active cancer. Best scan results in all my 7 years of MBC and at the reduced dose too. Sorry about the ILD, I hope the break and lower dose solves the problem.
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Dear illimae and ninaca , thanks for your support and feedback. @ Illimae , felt happy for you. Hope things continue that way.
So far I have my 1st dose at 4.4. Side effects are minimal with lethargy, metal taste , stomach and nausea but manageable. Going for 2nd dose soon. Im still having on and off headaches (probably bcos of the brain mets) and now thinking would a 5.4 dose be better off for me… hope members here could share their experience…
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Hello Fellow Enhertu Friends,
Just thought I’d give a quick update. I completed cycle 11 last Tuesday and my last scan 2 weeks ago shows regression of all spots of concern. After the initial shock of the side effects with Enhertu, things have definitely levelled off. I have some mild nausea that starts around day 3/4 and lasts a couple of days. Sometimes I’ll take an Olanzapine before bed, but not always. I do have constipation from the Ondansetron I get pre-treatment. Still trying to figure that one out. I’ve increased my fibre and start taking stool softeners on day 1. By day 3, if it’s still a problem, (usually is) I’ll take a Senokot, which does the trick. Other than that, I have found this drug manageable for the most part. The fatigue is always hanging around at varying levels. Week 2 is the worst for that. And I have lost a lot of hair. Not all, but noticeable, at least to me.
I know when I first started this treatment I was anxiously looking for any information. Hopefully these updates help anyone who is in the same boat.
Anna
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missmonty,
Yes, thank you for the update. I'm still on Elacestrant, but know my next treatment will be Enhertu.
For constipation, have you tried adding chia seeds to something like yogurt? I add 1-2 tsp of chia seeds to a full cup or more of yogurt (plus nuts, seeds, berries) for breakfast every day. Each chia seed develops a gel around it that adds bulk and lubrication to the stool. The longer the chia seed sits in the yogurt the more gel develops, so preparing the bowl the night before works the best. Drinking plenty of fluids is also important following any chia. I've read to never take chia dry i.e. like from a spoon. I definitely think chia helps with my bowel regularity. They do get easily stuck between my teeth and along the gum line, so there's that to deal with.
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Thanks Weninwi,
Thanks for the suggestion. I’ll give the Chia seeds a go. I eat at least 25g of fibre a day. You’d think that would do the trick. I’ll just add more….with more water. 😊
How are you making out on Elacestrant? My MO doesn’t seem too keen on it, although I bring it up almost every time I see him. I know that clinically they feel the cancer has become endocrine resistant, although I’d love to challenge that. Anyways, we’ll cross that bridge when we have to.
Anna
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missmonty,
I follow the Elacestrant facebook group which is quite active, but less well organized than BCO in my opinion. My understanding is that you must have the ESR1 mutation to qualify for the drug. The ESR1 mutation is key. Doesn't matter what percentage. If you have the mutation, seems to me you have reason to try it. In the Emerald Trial 45% of the participants had a favorable response, and the median PFS time was 3.8 mo, which my second-opinion Mayo oncologist says is "no home run" drug. But apparently those who had previously been on a CDK4/6 for more than one year, got more time out of it, like up to 8 months. The drug is said to "work slowly" and in the facebook group many have too much progression at the 3 month scans and move on to something else. The drug is generally well tolerated (with exceptions of course), so some woman say it was worth having 3 months of feeling good even if drug fails. I'm on bottle #4 and feel fine. My scans at 3 months were mixed - no new lesions, some slightly smaller, some stable, two lesions with mild progression, one with significant progression - decision made to stay on. My next scans at 6 months will tell whether the drug is really working.
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Weninwi,
Thanks for the info on Elacestrant. I do have the ESR1 mutation. Anyways, we’ll see. Hoping for a long run on Enhertu.
Wishing you success on the treatment. Hopefully your next scans are positive. I’ve had “mixed” results on other protocols, stayed the course and subsequent scans were good. Was able to get more time on these treatments.
Anna
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I hope people in the thread that started recently will find this established one. Having had a repeat chest CT right after Thanksgiving, the suspicious area looked worse. My oncologist wanted a bronchoscopy with biopsy before switching to ENHERTU. The pulmonologist must have missed the spot because no malignant cells were seen in the sample.
However, the CA 15-3 (which has been a reliable indicator for me) had gone up. My new therapy started mid-December at full strength with dexamethasone and 18mg of ondansetron to prevent nausea. Zofran worked too well, inducing constipation. Unfortunately, my hemoglobin tanked and I felt anemic all through Christmas, mostly laying on the sofa!
Second infusion last week was at a reduced dose & my tumor marker had come back down, an encouraging sign. Handling this cycle much better with an aggressive bowel regimen, I even went to a water exercise class but sat on the edge of the pool. Hopefully, my next scans will continue to show liver improvement and further clarify what is going on in the lungs.
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I had a curious low grade 99.4 temperature last evening. Felt somewhat “off” so had to find the thermometer. Not dramatic enough to be neutropenic and, having normalized this morning, I’m looking into the concept of neoplastic fever. Also, both ENHERTU cycles thus far have involved a number of night sweats. I take gabapentin but still have interrupted sleep.
I’m experiencing fatigue from ongoing anemia, despite the recent dose reduction. Not getting much done. Content to sit & view the Winter Wonderland outdoors, including seeing a gorgeous red cardinal against a bright white background as we ate breakfast. Hubby took an iphone photo. At least the bathrooms got cleaned during my steroid rush.
Offered a blood transfusion prior to the 2nd infusion due to Hgb=8.2, I’ll have more labs in 10 days with type & screen just in case. Meanwhile, my activity level is limited to what can be accomplished without too much effort. In addition, whenever we leave the house, masking is part of our routine. COVID remains a threat. Get the new booster!
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hi everyone, so nice to see this thread. Thank you to the mods for pointing me in this direction. I start Enhertu next week, and will post how I do. So helpful reading about everyone’s experience, both the positive and the challenging. It’s only been 6 months since my lumpectomy, and was on Xeloda and PemB - which did not prevent new tumor growth. Now in my right breast again bigger than before, and spread to skin on that breast. They thought it was in my cervical spine but now they don’t think the PET San bright spots is cancer after all, as it did not show as a lesion on CT portion of the test. Will have an MRI instead of a biopsy to see what is going on there. I’m hopeful the Enhertu will stop the cancer growing and spreading. If it reduces the skin cancers I’ll have mastectomy . Starting a new adventure managing cancer for the long term. So grateful I found this community of support. Wish me luck !
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Hi all — wanted to give an update re: my Enhertu treatment.
First, I want to say I miss how active the boards were (even if I was more of a reader than a poster) back before the change of platforms. I understand the change may have been necessary, but it's sad that so many previously active participants gave up on the site because of how poorly the transition was handled. I wish there were a way to get people re-engaged.
As for Enhertu, I mentioned on another thread that I was on a pause due to drug-induced pneumonitis. We have been monitoring my lungs for several weeks now, and I have been on Prednisone to try to calm the lung inflammation. I had a chest CT scan on Mon. — it showed some improvement (nothing got worse!) and after my pulmonologist and my MO conferred, my MO said we're going back on Enhertu. Woo hoo!
So I had infusion #20 today, regular strength, and as my MO likes to say, I am on a short leash, meaning we keep a close eye on how I'm breathing and any other side effects that might suggest a downturn as far as the lung issue goes. Although my scans have shown a lung issue, I do not have a cough or any shortness of breath or any other symptoms related to the pneumonitis. I am staying on the Prednisone for the time being, which has pluses and minuses — I have more energy and appetite, but I get indigestion, which hasn't typically been a problem for me.
Here's hoping the Enhertu continues to keep my liver and bone mets under control.
Can't believe it's almost February.
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Wow - your 20th infusion. Thank you for sharing an update. I am just one week into my 1st infusion - 1 week in, and have high hopes that my recurrence and bone mets can be controlled. Still adjusting to this new reality. I was off chemo for one month before it came back.
So far just feeling a little off, and have a metallic taste in my mouth. Energy and appetite are good.
Not sure if this is helpful for you, but I love the Cancer Fighting Kitchen cookbook, which has great recipes and are easy to digest… Might check it out if of interest.
I love that I have found this forum. It is very reassuring to read others experiences and share mine. Happy February (as of tomorrow).
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I’ll have infusion #30 tomorrow and everything is going well. After several months and a dose reduction I finally got the side effects under control.
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Hey Mae — up to #30 ?? That's great! So glad the side effects are under control. Good luck w/ your infusion today!
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I'm set up to have infusion #1 tomorrow. I hold hope this will help me. I currently have mets widespread in the brain and three liver mets with lymphangitic carcinomatosis in my lungs and stable bone mets. I'm about four weeks post Covid so that may be playing a part in this. Found this thread and it has calmed my nerves about side effects. Thanks to all that contributed information😀
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Wishing you well for your 1st infusion. This is week 2 of my first one, and except for being a little tired this week, it’s been a very mild entry into Enhertu. The skin cancers on my breast are showing signs of lightening and are less swollen too. I am actually looking forward to next weeks dose, to keep the melting happening.
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Hello Ladies,
I get my first Enhertu infusion tomorrow, I'm a little nervous but hoping for the best.
I haven't finished with my profile, I've been a reader for a long time. Originally diagnosed in August of 2016. Lump in my left breast that I found, and it was also in my lymph nodes in my arm pit. Had a lumpectomy, followed by chemo, followed by radiation. The number of treatments escapes me, I would need to look it up. I spent the next almost 5 years cancer free. August 2021, Cancer showed up in my bones on a pt scan. Ibrance was an effective treatment until 9 months ago. Have tried a few or maybe only two drugs since then that have not done squat. Everomilus, and the most recent Capecitabine.
I will report back after, and a big Thank you to those who have shared and are still sharing. I'm sure there are many like myself looking for answers/comfort/ a lifeline/ real life experiences that come to read. Not everyone is open to sharing, but I think everyone is open to some reassurance of some sort.
Shannon
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shannon,
There's a facebook group for Enhertu. https://www.facebook.com/groups/478640293032630/
I prefer BCO for support, but the facebook group commenters do offer lots of tips on what to expect and how to cope with side effects, etc.
Some useful general tips I read 1.) hydrate well in preparation and stay well hydrated 2.) recommend slow infusion rate over 60 to 90 minutes 3.) pre and post infusion IV fluids. Hopefully infusion nurses will be responsive to such requests. There seems to be a range of different post-infusion treatments given to off set side effects.
I see my oncologist Tues and expect she will recommend Enhertu. Like you, pretty nervous.
I'll keep you in my thoughts and prayers.
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Had my 1st infusion yesterday. Pretty uneventful. I did fall asleep early and slept very hard, it was nice!
Woke up at midnight feeling rather refreshed 😋. Puttered around some, read and wrote some while in bed. Talked with the dogs. Turned T.V on and ignored it. Ya know, all the typical middle of the night " I'm not sleeping stuff " Then slept from about 5 until 10!
I need to do some errands today, feel plenty fine to accomplish them. I figure it's the steroids keeping me going. Hope every one is having a great day!
Shannon
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Shannon,
Saw my oncologist today. I'll be joining you on Enhertu in about 2 weeks. I asked to start at 80% dose or 4.4mg/kg. My reasons - I'm 75, not a big person (125#), have never had IV chemo, all my other cancer meds have ended up reduced to lower doses. My oncologist agreed but said she would then not go up in dose. I need to think this through some more.
I asked about infusion rate - she said first infusion is over 90 minutes, then every subsequent infusion is over 30 minutes. I asked if the rate could be slowed for the subsequent infusions and she said probably not.
What were you given as premeds? Were they IV or oral?
I'm very interested in how you do. Hope you will continue to share.
Are you in WI? I'm in Dane Co. Just returned from AZ for my scans and now unhappily won't be going back any time soon.
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Weninwi, hi there! Just wanted to mention that I did 100% for 9 months until I had to reduce the dose due to extreme fatigue and have been at 80% for a year now with great success. My local MO mentioned recently that he thinks the starting dose will probably be lowered due to the volume of patients who can’t tolerate the full amount and that they are seeing the same effectiveness from 100% to 60%.
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@weninwi Thank you for the response!
I will try to continue on with the commentary for sure. Today is much like yesterday went to sleep early woke up at midnight feeling great….LOL! Back to sleep around 5am and woke at 10am. I need to try and change that if it persists!
The pre meds were given by IV Zofran for nausea, and dexamethasone. I have both at home in pill form that I take. oh wait, pretty sure I got the Zofran in pill form. I also got a full bag of just saline.
I want to note that this is the first time this little clinic of mine has administered this drug. I spoke with the nurse about all the things that I had read in this forum and she was eager to hear and to follow my lead on a couple things. The full bag of fluids was something that I read about. There are people that go in on like day 3 or 4 after treatment just for a bag of fluid too. I did not ask her about that but plan on bringing it up to onco when I see her in a few weeks.
She brought up the 90 minutes the first time and 30minutes there after. I told her that I read from someone with experience that a slow feed was beneficial with the side effects. She said we will feed it at 90 minutes if that is what you prefer. I wonder if your onco thinks because there will be people waiting for your chair? Talk to the nurse that is doing the IV. Good luck!
I don't want to "brag" on this stuff too much….but I have to tell you that the pain I was feeling in my spine is not painful anymore…..that quickly? really? what the heck!
I am in polk county wi. Way north and west of you. Az is on my list of places to go spend some time in the rv when able. If this Enhertu works for me and I get the SE's under control I'll be hittin the road! errr ummmm in 2 week intervals 😋
Shannon
P.S Forgot, I read someplace that this drug and {many others too} could be cut in 1/2 with out loosing effectiveness. I support you on your 80% decision!!
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Hi all, had infusion #2 today. My pre meds are dexamethasone and emend, followed by a Full dose over 30 minutes, was fine. Breast surgeon did an exam and after one dose significantly less tumor and skin eruptions, a good sign. Feeling great tonight, will keep you posted. Just fyi - I do gentle stretches (cancer rehab on YouTube) and cardio/strength ( Senior shape or AIM fitness on YouTube) every day, along with meditation and it helps so much with helping my body / mind manage my treatments and feel energized. Just wanted to share in case this is helpful. Have a lot of resources to share if anyone is interested, just let me know.
I know it’s early days for those of us who just started Enhertu or will be starting soon. Thank you to the gals who have been doing this regimen for awhile for sharing. We can reassure each other, and that is so nice. Wishing everyone a happy Valentine’s Day.
Rhonda
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shannon, rischaller, anyone else,
Do you get your infusion through a vein in your arm or through a port? If through a vein in your arm, how many infusions so far and any problems?
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