Anyone starting brand drug, Enhertu?
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Yes, bag and filter for every infusion. Pharmacy forgot the bag once but the nurses were quick to get one after I pointed it out.
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Hmmmmm, I don't think any of this has been done to me! Next infusion tomorrow, I will inquire about it! Thanks girls!
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Hello Everyone,
I’ll be starting this treatment in a few weeks, and am feeling quite nervous.
After almost 6 years, this will be my first infusion chemo treatment. I’ve been following along this thread once I found out this would likely be my next line. Side effects really seem to so different with every one.
Any tips for helping manage side effects the first few treatments would be greatly appreciated. I will also share my experience.
I’ve been very fortunate that I’ve had minimal side effects from my past treatments. Cautiously hopeful for the same with Enhertu, although I’ll tr to prepare for the “worst” so to speak.
Thanks,
Anna
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I do not have a port and have had no trouble at the site of the infusion. Your first treatment will take about twice as long so they can go very slowly and make sure you have no adverse reaction to the drug. I would advise having some Phillips pills or similar on hand in case of constipation from the pre-med steroids. Hope it treats you well.
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Thanks nopink2019! I Appreciate the feedback and the tip re: constipation.
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MissM, we all react differently, I have hardly any SE's. You could be constipated or end up with diarrhea! I have never gotten sick, some women are sick a few days up to and over a week. I have some fatigue for a couple of days, but sleep is hard due to the steroids. This usually lasts about 3 days and then I'm good. Some women have hair loss, some don't. I've had 8 (I think) treatments and my hair continues to fall out. l'm not bald, but it's super thin. Good luck and I wish you minimal SE's!
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Thanks Goldie. Nice to hear that you’re experiencing minimal side effects, and that you’re 8 treatments in. I hope it continues well for you.
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Adios Enhertu, I hardly knew ye.
After three infusion treatments my ascites was worse, my CA antigens hit the top of the chart, and it didn't work. All I have to show for it is less hair.
Next stop, Alpelisib/PIQRAY here I come.
In the last one year Lynparza failed, Xeloda failed, Vinorelbine failed, and Enhertu failed. I like that my doc is absolutely ready to ditch a med that doesn't work for me, and they didn't.
I hope the ladies here now and in the future get better results from Enhertu than I did.
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Hi PNW,
So sorry that Enhertu and other treatments did not work for you. I was just like that with Ibrance, Verzenio, Affinator not working for me. Finally Xeloda worked for me, and now hopefully Enhertu will be my next line of treatment to work. I was genetically tested, and PIQRAY won't work for me, but I hope it works for you. Keep in touch and tell us how you are doing.
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Continuing on with Enhertu, started back in October of last year. Still have miserable SE's, mostly nausea, joint pain, fatigue and very low mood. All my professionals are asking me if I want antidepressants, my response is why bother. No, I don't say that out loud, but rather, I'll give it some thought. Just had a bone scan and CT scan is scheduled for May. Depending on how the results for the bone scan turn out, I will be asking for a short break. I don't know why my side effects are so pernicious this time. Maybe because I'm heavily pretreated. Nine years of stage four cancer can really do a number on you.
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Ninetwelve, just a thought, olanzapine is an antidepressant but I used off label to prevent nausea/vomiting. I was prescribed the lowest dose and notice no change at all, except for a complete end to feeling ill. I was puking for 2 weeks straight after my infusion, now nothing, it gave my my life back. I started it for 10 days after treatment and am down to 7 now. I also recently had a dose reduction, which to my surprise completely eliminated the major fatigue. I honestly have no complaints. I hope you’re able to find what works and feel better.
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I had scans this week and was very concerned that this drug was not working for me. MO said she would call me stable, which sounds like a win to me. Blood work shows liver function pretty normal. She said it's possible that the darkening on my liver scan is the drug killing the cancer cells, but can't be sure. Will do another CT in 2 months. Better news than I was expecting and hopefully the drug is kicking in. At least I can tame my scanxiety for a little while.
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nopink, sounds like a win, congrats 🎉
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Yes I feel that way, illimae. Just felt like good news I needed to share.
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Thanks, illimae. I've already reduced my initial Enhertu dosage by 20%. I will look into olanzapine.
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nopink, I hope you continue to get good news.
I had to reduce the dose of Enhertu due to extreme fatigue and gettting an UTI after every infusion. The UTIs have stopped and the tiredness is less. It is strange how different side effects are for everyone. My hair is growing back after Trodlevy. I dont get sick, nor constipated, but diarrhea continues to surprise me, so I carry Loperamide wherever I go.
Good wishes to those starting out and those who continue on this med..
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I think my advice regarding constipation & this drug has been misleading. I think that problem has occurred immediately after the infusion, which included pre-med steroids. Once that goes away I'm pretty normal
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thank you illimae, it is good to know .
May we all have good luck and navigate it well 👌
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Hi , I am beginning a little campaign to get the 'dislike' button removed. I do not think this will help anyone and could negatively affect someones mental health if someone dislikes a message that is significant to them. The discussions are informative or supportive and a place to vent . I dont want a 'dislike' button .
Please send a message to the Mods if you agree. Thanks
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Is anyone on this drug that is ER+ HER2- and +1? OR anyone that was ER+ and now Triple Neg but her2 +1?? If so, any success?
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I am having success with Enhertu. I've been + 3 and +2 Her2 on an immunoassy test. At the moment there is no agreement as to how to evaluate +0- +3 for Her2neu. I was Her2 negative on a FISH test so Herceptin was never in the cards for me.
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Wanted to share my week 1 experience.
Day 1 - infusion late afternoon. Felt totally normal, although sleep was a challenge, likely from the pre dose of dexamethasone. Also had a pre dose of Ondansetron
Day 2 - dull headache, mild nausea in the evening, but overall I felt fine.
Day 3 - nausea, headache, no appetite. Took an olanzapine before bed.
Day 4 - no headache but increased nausea. Took another olanzapine before bed.
Day 5 - felt the same as day 4, but nausea subsided as the day went on.
Day 6 - today woke up feeling a bit nauseous, but not too bad. Managed breakfast and coffee.
The fatigue is significant, managed with naps. I hope by tomorrow I’m feeling more like myself.Hope everyone is doing well and enjoying the weekend.
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missmonty, keep a log of your side effects so you can compare them next time around. If nausea continues to be a problem try and take the anti sickness meds as soon as possible. Fatigue was a problem for me, so after 2 infusions my dosage was dropped by 20%. it has helped but I get tired very quickly, particularly during the first week. I hope you do well on this regime.
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Hi everyone, I was diagnosed mbc last September with skull, multiple bones, mediastinal and hilar lymph nodes, and 1 spot in my liver. I have been on Ibrance/faslodex/Xgeva since then. I had a pet scan in March which showed a really good response in some areas but also a new liver met and bone met. We radiated the new bone met and I did a liver biopsy but I stayed on Ibrance and faslodex while we waited for biopsy results and radiation to give it a little more time. I had a follow up pet yesterday and I have 3 new liver mets. Some bones were better, some had more uptake… so Ibrance definitely didn’t work for me. I’m pretty crushed because I was really hoping to get a little time from my first line. My oncologist is recommending Enhertu because I am her2 low. 2+ in my lymph nodes and 1+ from the liver biopsy. I am really nervous because it seems that this drug is so hard to tolerate. The steroids on AC-T with my original diagnosis did not agree with me at all so I’m hoping I can use a different premed. What premeds are standard? Has any one used Enhertu as their second line and found any long term success? I know the approval is pretty recent. Are there ways to manage the side effects and preserve QOL? I love my job as a teacher and it keeps my mind busy and in a positive space so I am hoping to continue at least part time. Thank you for any tips or suggestions. Blessings to all.
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mommacj, Enhertu is my 3rd line and I’ve been on it for a year now. Early on it was tough but got better with olanzapine for vomiting (my biggest problem) but I got a dose reduction to 80% in February to manage the extreme fatigue and since then I’ve felt totally normal. I have a treated/healed bone met and had 6 (now only 3 tiny Brain Mets) with nothing new in brain or body since I’ve been on it. Scans again next week but I feel good about it.
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illimae thank you! I am glad that it has worked so well for you and that you have found a way to manage the side effects. What premeds do they give you? Do you think it’s possible to go without the steroids and do emend and zofran? Do they give you neulasta? Im hoping to not need steroids. I didn’t like them on AC-T at all.
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they give me a zolfran and a steroid before the infusion because I have a history of severe reactions but I think many people can drop the steroids after the first dose.
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They not drop the steroids all together, but after my first dose steroids for reduced
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Denny10, thanks for the suggestion and the rest of the group for continuing to share.
So after I thought I had passed the worst potential side effect days, days 7,8,9 were brutal. Quite similar to the experience illimae shared early on on the thread. Day 9 was actually the worst day. Brutal headache and vomiting almost all day. I couldn’t even keep water down.
I am somewhat encouraged to hear that it does get easier. I hope that’s the case for me. I will also get ahead of the nausea and vomiting quicker and worry about the constipation after.
Yesterday and today were good days, so I have quite a bit planned for the weekend and next week, before my next treatment May 16th.
Have a great weekend everyone.Anna
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Thank you illimae, no pink, and denny10 for the suggestions. I hope and pray we all get or are getting good results from this treatment. I think I will definitely keep a log of my side effects because my brain and memory don’t work as well lately lol. So I will have a record for the next time. Miss Monty I’m sorry it got so difficult on days 7-9 but I’m so glad you are feeling better. I hope you have a really nice weekend. I have my first infusion Tuesday and for what ever reason this one scares the pants off me. My oncologist is starting me at 4.4 dose which is like 80% and then moving me up if I tolerate it ok. One thing I was bummed about was my onc suggested I have my last faslodex injection on Thursday so I did. If it didn’t work with the iBrance I question why I should have done that?… She said it would be the last one and maybe since I had a partial response in my bones she thought it would be helpful… I’m not sure? While the side effects aren’t terrible at all I do have a stiff neck and sore hips and butt. Oh well. I read a very encouraging statistic about Enhertu doubling PFS so I pray it works for us for a long time. I had a very short run on iBrance and faslodex… well actually no run really. How long has everyone been on Enhertu?
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