Anyone starting brand drug, Enhertu?
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I’ve tried several things to ease constipation from olanzapine including pills, probiotic yogurt drinks and probiotic gummies. So far, Natures Bounty probiotic gummies are the best and I haven’t had any trouble in months. Definitely recommend and wish I’d found these years ago. Just fyi.
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@illimae - thank you for the hint about Natures Bounty probiotic gummies. Ordered them.
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Had my scan yesterday and it seems there are mixed results. Enhertu is working well on my liver as there are fewer and smaller mets. Yay! This is only the second time that a treatment has had positive results on my liver. Other than that, it has been full speed ahead with the liver mets.
My bones are not as lucky this time. Bone mets have basically been stable since 2023, but there are now increased and new areas.
My first impression is to stay on the Enhertu since I think my liver would take me down first and I've already had ascites. But lot of the new bone mets are in my thoracic spine, and I can feel them. Not really pain, but something is going on there.
It also makes me wonder if I am dealing with two different cancers or maybe one area has mutated differently because why wouldn't they both respond the same way?
Can I give this another three months without making things much worse? I guess that is the question I'll be discussing with my MO next week.
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@dulcea Sorry about the mixed results. I was in a somewhat similar situation last year. After 2 years on Enhertu, my body was still NEAD but I had two new brain mets pop up. It was suggested that I might want to try something new or a trial but I wanted to stay on Enhertu, so I had radiation and it’s been almost a year with nothing new. I’m thinking that those spots didn’t have enough HER2 protein and slipped by but who knows.
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I just started Enhertu/Perjeta in June for stage IV, hormone-, HER2+ mBC. The PET-CT scan I had in March only showed 3 tumors (2 in lungs) and lymph node involvement. My alk phos numbers kept creeping up so I think I had micromets brewing in my bones too.
I was diagnosed with stage I, hormone+, HER2+ BC in 2015 so they think this is a recurrence although I'm hormone negative this time. I had my port installed in April which terrified me but as of August, it's much better. My 1st infusion was THP in May but I had an allergic reaction to the low dose Taxol the next week so I was switched to E/P in June. Happy to not have to take Taxol.
As far as side effects, I've had stomach pain, nausea, fatigue, loss of appetite, loss of taste, dry mouth and weight loss. These effects last for about 2 weeks after the infusion so I only get 1 week to recover before the next infusion. I'm given varubi and aloxi as pre-infusion antiemetics along with decadron, Benadryl and tylenol. For post infusion nausea, Zofran does nothing but compazine and Ativan seem to help a bit.
My 4th E/P infusion was supposed to be last week but it was postponed as my ANC was too low. I was previously given Udenyca to boost my WBC and ANC levels but not this time for some reason. Treatment interruptions scare me. I'd rather have a dose reduction than a treatment interruption but the Enhertu label says to postpone treatment when ANC is below 1.5.
The good thing about this treatment delay is that my appetite and sense of taste have completely returned.
Based on my CEA and CA27-29 tumor markers, I'm responding really well to this treatment as they're all in the normal range now. Won't get another PET-CT until later this month.
Has anyone had their Enhertu reduced from 5.4 mg to 4.4 mg or 3.2 mg?
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Since I'm losing weight, my medical team doesn't want me to go on any diet restrictions but I have been trying to avoid red meat after reading this:
Eating a lot of red meat linked to dying from breast cancer
A diet high in red meat — meaning a woman ate more than 70 grams (about 2.5 ounces) per day — was the leading risk factor associated with dying from breast cancer in both older and younger women, according to an analysis of the Global Burden of Disease database.
“If you were to implement one change, I would recommend [eating less red meat],” said Dr. Samantha El Warrak, a hematology/oncology fellow at the Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine, who presented the results. She talks about the results and other lifestyle risk factors on The Breastcancer.org Podcast.
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I'm also taking Vitamin D, after reading this:
There is research to support the idea that higher blood levels of vitamin D may be a protective factor for people undergoing breast cancer treatment. Researchers from the University of California, San Diego School of Medicine reported that “breast cancer patients with high levels of vitamin D in their blood are twice as likely to survive the disease as women with low levels of this nutrient.”
There is also evidence indicating that a lack of vitamin D may be associated with a poorer outlook for people who have already gotten a breast cancer diagnosis. A 2021 study noted that “compared to those with deficient vitamin D levels, patients with sufficient levels had significantly better survival outcomes.”0 -
@chocomousse, Promethazine (an old antihistamine) taken off label for nausea is the only thing that works for me, might be worth asking about, if other meds aren’t good enough. Also, I did have a dose reduction to 4.4 after several good scans and have been mostly stable (exception being 2 brain mets last year) for over 3 years. The vomiting and fatigue at 100% was just too much for me.
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@chocomousse I'm sorry you had to interrupt your treatment. As you can see from this board, many of us have experienced lessened SE's the longer we stay on Enhertu. I hope the same for you. Two weeks of feeling bad after an infusion is a lot! My appetite has changed for sure. My portions are getting pretty small, but I feel okay and I haven't lost a lot of weight. Not worried as I have a long way to go before being considered underweight. I was a red meat kind of person, but now I eat fruit and sweets more. I also used to be big on cheese. I eat processed food during my infusions. Two cookies during the first half hour and a bag of Lay's during the second hour. I'd say go for whatever makes sense to you and what makes you happy. I do take D supplements. Best wishes on getting back on track soon and keeping your weight loss manageable.
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@illimae, I actually have tried phenergan which seemed to work better for me when I was on the THP. How long have you been on the 4.4 mg of Enhertu?
@onlywhenitrains Thank you!
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I’ve been on the 4.4 dose since February 2023.
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@illimae - how many gummies do you usually need take a day? Do you prefer taking them with or without food? Thx.
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I take two as directed on the bottle and I take them at night but only because I still have trouble with pills and they help me swallow anything that doesn’t go down easy.
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I'm still having issues with blurriness. Is it the Dex? Has anyone cut their Dex dose? I am on two pills a day for three days after infusions. I told one of my infusion nurses that I rarely have had a problem with nausea on any kind of meds and she said with Enhertu it's because of the Dex/antinauseal combo. I'm not so sure. I'm going to suggest a cut-down to my ONC.
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@onlywhenitrains my blurriness has cleared up a lot. I remember questioning whether I should be driving with my eyes that blurry. I used Visine Multi-symptom a few times a day and that helped a lot. My optometrist said it was just dry eye so suggested systane drops but the best thing is those warming eye masks once a day since it's just my glands that are not opening up to let out the fluid. I still have some extra dryness in my right eye but they are much better. Coincidentally (or is it?) , since starting enhurtu, I have acquired floaters too! I hate them! I keep thinking I have those little bugs flying in front of my face or threads on my eye. Annoying!
I now take two and a half days of the steroids so I just don't take the last one because they are really starting to bother my sleep! I only take the nausea med at night because it causes drowsiness, but that doesn't seem to help anymore for sleep. Maybe I should move on to melatonin or something.
Right now I am C5/D3 and am looking forward to sleeping tomorrow night.
And by the way, I start work on Monday with one week off (infusion week) and two weeks on, working 4 1/2 hours a day. I am very excited. I can't imagine sitting home thinking about having cancer day in and day out. Work is my sanity! I know it won't last long but I'm going to do it as long as I can.
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@dulcea Thanks for the info. I'll ask my eye doctor when I get back to town about systane and the eye mask. Do you wear contacts? I do. It's probably not helping. So glad to hear about your work schedule. It's always a good idea to have something to look forward to.
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@onlywhenitrains yes, I wear contacts but only a few times a month for social situations. I gave up on the progressive ones because we just could not get them right, so I wear ones for distance and bring along reading glasses. I just upgraded my progressive glasses too and that has helped immensely. My prescription dropped a lot and the optometrist said that is common as we age. Both the Systane and the microwaveable eye masks are available over the counter. I hope your eyes get better. It's nice being able to see!
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Hi! This is my first time posting. I had my sixth infusion of Enhertu yesterday. It is my second line of treatment after Kisqali and Letrozole. They found evidence of tumors in my left axial lymph nodes and and my mediastinum and I was now PR- So I switched to Enhertu. I am HER low versus HER+. Like many others who have posted my nausea subsided over time and is barely noticeable now. That is also true about my change in taste and mouth sores. I lost my hair and wear a wig which I honestly can say I like. No need to worry about bad hair days or summer humidity.
I have two questions. 1) has anyone had heart issues with Enhertu. I get a low heart rate the day after my infusion and then have often gone into A-fib 2-3 days after this. The last time I needed to be hospitalized for two days to have a cardio conversion. My next cardiologist appointment is in 3 weeks. He thinks it is related to the Enhertu. Wondering if any others have run into this. 2) Do you get a PET scan versus a CT/bone scan and at what interval. I have been getting a PET scan every 12 weeks for over two years and suddenly Aetna is denying the PET scan saying it’s not the standard of care for breast cancer. Just wondering if anyone else has gone through.
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@dulcea I've long been able to do monovision with the kind of contacts that you can wear for a month straight. As in, never taking them out even at night. No reading glasses (and I'm 65). I fear those days are gone. I've tried all kinds of combos (glasses, readers, one contact, two contacts, no contacts), but it seems like my blurriness situati changes all the time. I suspect I'm like you and my issues are not related to vision but to eyes drying out. Seeing the eye doctor in a week and will bring up your suggestions.
@mjconnor Getting my 9th Enhertu infusion tomorrow. I now get echocardiograms every three months. I was told Enhertu can affect heart function. Throughout my entire treatment situation (about 5.5 years now), I have been getting a combo platter of CT of torso, abdomen and pelvis and a nuclear bone scan every three to four months. No PET scans. I have no idea what the standard of treatment is, but EFFING insurance! P.S. As you can see, many posters have their history listed under their signatures. It took me a while to figure that you can create this narrative under "signature settings." I was too embarrased to ask how everyone else did it. 😎
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@onlywhenitrains my blurriness changes too. I think it has more to do with how loyal I am to the drops and heating pad than anything else. Out of sight, out of mind, as they say. Lucky you not needing reading glasses until now! Why do you stick with the contacts? At this point, I think glasses are just easier.
@mjconnor welcome to the boards. The same happened to me with insurance. I was getting PET scans every three months and then insurance changed their minds. Now it's a CT scan (chest and abdomen) and a nuclear bone scan every three months. When it changed from one to the other, the radiologist said they could not really compare the two and I probably stayed on Xeloda three months longer than I should have as there was a lot of progression. I recently had the CT and bone scan and asked the MO if it might be worth it to fight for the PETs instead. She said the PET focuses on activity while CT focuses on size/shape so it's beneficial to get a PET/CT. If you are dealing with one or two lesions, PET is preferred. When you are dealing with lots of lesions, CT and bone scans are fine. I hope I remembered that correctly.
As an update to my 5th round, I also don't have nausea, my taste has come back and no more mouth sores! The worst part of my treatment is the steroids. My hair is growing back too, and it's growing back brown after all that hard work I did finding a grey, hand-weaved small size wig! Or maybe I just can't see the grey hairs? I am surprised at how long it is already. School started yesterday and I don't think the kids noticed my wig. I'm sure they will at some point, but I got past the first two days without having to explain anything. And I am starting to see the benefit of wearing a wig too! It is just a tad bit uncomfortable but I will carry on. I also echo @onlywhenitrains - I get an echo every three months to make sure the left ventricle is working OK which is specific to Enhertu. So far, so good. @mjconnor are they following that with an echocardiogram?
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@mjconnor Welcome. I’ve been on Enhertu for 3 years and haven’t had heart issues but I do have a naturally low resting heart rate and occasionally set off the below 50 RHR alarms. We don’t treat that but I am on low dose Carvidilol for “heart protection” after a reaction to a different anti-her2 medication, which dropped my ejection fraction too much. After a break and further testing, my cardiologist allowed me to resume treatment with the meds and regular echocardiograms. My blood pressure and body temp are also low, so this is just my normal.
For scans, I only get CT’s every 6 months (I was getting them every 3 for years but I’ve been stable with a single bone met for a long time so far). I also get a Bone scan annually and Brain MRI’s every 3 months because my brain is where the trouble is. I’ve never had a PET but assume that’s because there’s no liver, lung or soft tissue involvement below the neck.1 -
@dulcea - did you lose your hair from being on enhertu or from before you started enhertu? My hair, since being on enhertu, has thinned to the point that I have to wear hats at all times.
I have my 4th infusion next Wed. Hearing that your hair and taste are coming back and that you no longer have mouth sores is music to my ears.
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@dulcea - thank you very much for the info on the various scan options. It was very helpful. I am not having echos regularly as A-fib is not detected or treated with this. I will talk to my cardiologist though if I should be monitoring heart side effects with that.
@onlywhenitrains - thank you for sharing your experiences with echos and scans. It was all very helpful. Hopefully I set up my signature successfully. I won’t know until I finish this post.@illimae - thank you for your kind welcome! I appreciate the info on the heart issues and your experience with scans.
The collective scan info has been very helpful. I just wanted to echo the input that over time the most annoying side effects from Enhertu do seems to subside. Although I have no new hair growth but am curious to see whether that changes.
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@mjconner - fyi, my MO informed me when I first started enhertu that an echo is required every 3-6 months since it can affect your heart. It is not checking for afib.
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@going2beatthis When I was on Xeloda, my very thin hair grew back thick and curly. Then, I lost all my hair except for a few grey strands right around the second treatment of Enhertu. It grew back a little then fell out again in patches and is growing back again all over. I hope it sticks this time!
@mjconnor I wonder if IBC has a different protocol for scans. I don't know a lot about it but I know it's a little different. And yes! Your signature worked!
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@dulcea I agree the steroids are the worse part of the treatment. For my last two treatments, I have taken 8mg Dexamethasone on day 1 then 4mg for 3 more days after speaking with the pharmacist. I have also been given a supply of Ondansetron to help with sickness, plus dioctyl for Constipation. I would like to stop taking them, but on days 5/7 I feel slightly sick. The steroids really affects my sleep, and I don’t think that can be helping my brain mets to heal. I am still waiting for Brain MRI, another 3 weeks at least before I have any answers. Have you reduced your intake? I would be encouraged to try after speaking with the pharmacist first, if you don’t feel sick.
My hair is very slowly growing back all over, but I have been using Regaine (UK) extra strength, now the Nurse tells me if I stop using it my hair will fall out again. Can this be right? For a bit of fun I have an up and coming visit from a drag queen, about wig advice 🤣🤣🤣. I am glad to hear your hair is growing back fast.
Sorry to hear about mixed results from the scans, but glad to hear that you have been able to return to teaching. I hope this goes well for you. Vacations work for me.
I have just had my 6th treatment on Tuesday, seems to be following the same pattern. I’m very fatigued, up until day 9, then start to get back to my new normal. I have started to take drops for dry eyes and they are improving. Have to get the sickness and constipation medicine balance right this time. In the UK so under the NHS, last two times had to wait several hours for drugs to be prepared. Pharmacy in meltdown so practically everyone on the ward delayed treatment.
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My MO decreased my steroid from 12mg to 8mg. I had mentioned to her on Tuesday about my extreme tiredness and inability to sleep at the 12mg level. I also told her that I was not having any nausea (knock on wood) from the enhertu,,
Prior to my enhertu infusion yesterday (#4) , the steroid had administered as a premed at the time of my infusion. Also, when the steroid was 12mg, it was an IV bag that was given over 20 minutes after the Aloxi and Cinvanti (also IV). Yesterday, all three premeds were from bottles that were added to my IV line and cut about 20 mins from my session at the clinic. Am glad that I do not have to take pills over a number of days.
I slept a lot better last night, wasn't as tired yesterday or today and am not experiencing any nausea. 😀🤗
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@stirfry I don’t take any steroids with my Enhertu but do want to give other suggestions for the constipation and nausea. The usual meds don’t work for me but I had great success with Promethazine (an antihistamine) and natures bounty probiotic gummies for constripation. I hate taking pills and the gummies seem to work better anyway. I hope you’re doing well and can find what works best for you.
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Dang! I had a bout of fatigue several days after my 9th infusion. I stayed in bed all day, napping around 2 hours at a time. I'd get up, have a small meal, repeat. This is not unpleasant at all. I'm a fan of reading and sleeping peacefully. Not a fan of missing beautiful weather. I thought I was done with this side effect after my 4th or 5th treatment.. Guess not. Remind me not to get smug, please. I like to think if this happens again, I can push through the fatigue if need be, i.e. for traveling. Aside from the whole day in bed situation, I have also been taking long naps in the morning for the last four days.
My brain scan was clean. I have an eye doctor appointment next week and will see what he thinks about steroids in terms of my eyesight issues.0 -
I had heart arrhythmia after my infusions too so my doctor reduced my decadron from 10 mg to 5 mg which helped a lot.
I'm back to taking t Zofran for nausea. Interestingly, my post infusion extreme nausea only lasted for 6 days this time instead of the typical 10-14 days. This may be because my last infusion was given after 4 weeks instead of the standard 3 weeks.
Wondering if I can switch to every 4 weeks instead of 3 permanently.
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