Anyone starting brand drug, Enhertu?
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Going in for Infusion No. 19 on Thursday. I'm still at full dose with minimal side effects. I have been on Enhertu for a year. So far, my worst SE has been cataracts from the Dex. I had cataract surgery on both eyes, I'm off the Dex. Perhaps I didn't need it, but I now have perfect eyesight because of it, so I can't complain. I also suffer from ONJ due to my years on Xgeva. Another weird SE, but it forced me to slow down my chewing. Enforced portion control! I lost 40 pounds in a year. Some of which is also due being on Enhertu, I think. I had 40 pounds to spare and I have leveled off. Again, I got some benefit from a bad SE. I want to be encouraging to anyone out there who is following this forum. It's possible to feel well on this protocol. I just got back from Puerto Rico. I snorkeled and swam and drove an ATV through the rainforest. I don't think I'm rare. I just think that people who are feeling well don't post on forums.
At the same time, I am grateful to those who keep us all informed about their difficulties and setbacks and how they manage to work through all of it. Even though I've felt fine so far, I know it can't last forever and I'll keep up with this forum so I will have a store of information on how to cope with the little stuff and the big stuff and the existential stuff.6 -
I just found out I am going on Enhertu. I am going to read some of the previous posts and get caught up with this Thread.
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Hi @candy-678
I was on Enhertu plus Perjeta which is stronger than Enhertu alone and can say that it is a miracle combo. If you can tolerate the treatment, stay on it for as long as possible.
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I just had my second dose of enhurtu and perjata, these are encouraging results. Thanks and continued healing!!
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@lmgspann, hi! We’re really glad you’ve joined us here. You’re very welcome in this space, and we’re here to support you, listen, and walk alongside you as you go through treatment.
Please let us know how we can help, or if you just want to share how you’re getting on.
Wishing you strength as you continue forward.
The Mods
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Hi. I am on Faslodex and Kisquali but now have developed drug resistance and my Oncologist recommends Enhertu. I am worried about the side effects and discomfort and would like to hear any updated sharing on this.
mck
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@louisamck I'm glad you found this thread! As you can see from previous posts, many people have had encouraging results from Enhertu. The side effects seem to be wide-ranging, but there are many ways to manage whatever comes your way. Best wishes to you.
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Same to you, @louisamck , we’re here for you as you start this next step. It’s totally normal to feel worried, but you’re in the right place to hear real experiences and ask anything that comes up. If it helps, here's one of our articles on that you might want to take a look.
We’re all here with you!
The Mods
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Hi all,
I have gotten great information from previou sharings in the group on Enhertu. Thanks to all! all personal experiences are so valuable and useful. I have a metastatic tumor in my liver which grows significantly as pick up in my last PET scan in February, I will be having another PET scan in May to check the status and decide whether to change from Kisqali/Faslodex to Enhertu. I'm still worrying about the side effects...
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hey all and welcome @louisamck to the group, sorry you had to join but glad you found us ☺️
I had my fourth infusion yesterday and first one at 80% dose. My hemoglobin kept dropping while on full dose, I had to do 3 blood transfusions in 2 months along with the tumor fever and insane muscle shrinkage that left me really weak. We’re hoping that the reduction will tackle these issues 🤞
Also had my restaging scan this week and have my results appointment next Tuesday so anxiety is living rent free in my head. Overall I feel that Enhertu has worked some magic in me, I can feel it in my body and breathing. Also, since I was de novo, they never operated on my breast and I can feel a difference in it as well. But I’m having all these invasive thoughts like what if this improvement is in my head etc. It’s my first scan while on Enhertu and after my terrible experience and progression with Kisqali I’m petrified 😱
I hope everyone is doing well in the group!
@chocomousse how are you doing, have you recovered?0 -
@elena_p , I got my 20th infusion today. I often get my test results before my onc appointments through MyChart. I like to get my information asap, but of course I wait until my "results appointment" to get the real scoop. MyChart is something to consider? Especially to get a sense of what is in your head might actually be real. I hope it is!
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@onlywhenitrains, 20 infusions wow!! I hope they continue to keep you stable and active 😊
I have my scans at the hospital and, here in Germany, they are required to be examined by two different radiologists each one providing their own report. Then the tumor board has to review them and give me the final report in a week. They unfortunately don’t work with apps so it’s not an option in my case.. so anxiety it is for a few more days 😅
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Hi elena_p,
It's been about 8 weeks since my last infusion and my energy and appetite are so much better. Since I reached NED in January and have had 2 negative Signatera's since then, we're going to go the wait and see route. I won't know if my lungs have recovered until my next scan which should be in June.
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I had my first cycle of Enhertu yesterday. All went ok with the infusion. Now wait and see side effects of cycle 1.
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I finished my second infusion of Enhertu a week ago. I felt quite a positive difference this morning and pretty much all day. My poop was more normal, my nausea reduced, my appetite was better, my attitude was better, no headache or fatigue. I just hope it continues like this. I wish I could book a last minute holiday to enjoy these 2 weeks to the fullest. I would if money permitted and I was able to take my granddaughter along. I am afraid to trust after 3 recent treatment failures. Scans aren't until July so patience important. Hope you are doing well out there!
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@sorella. Great news about your positive difference in side effects. Maybe once you get a few more treatments under your belt, you can plan ahead for holidays with your grandaughter. My oncology team is very supportive of my travel schedule and I have done quite a few trips once I felt comfortable about my ability to take them. I keep plane travel under five hours (Los Angeles, Puerto Rico, Lake Champlain) and I've done a few driving trips. We have a cabin in Wisconsin (10 hour drive which we break up into two days). We leave the day after my treatment and come back the day before. My stamina has been good in spite of some stressful airport nonsense. I hope you get to enjoy your time feeling well to the fullest whatever you choose!
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Hey all, quick update on the scan results, they are pretty mixed. Everything thoracic seems to regress- lymph nodes, lung lesions, breast and sentinel nodes. Yayyy! This is the first time, since my diagnosis, I had any shrinkage.
On the other hand, thanks to my pesky nodes there are small (<2.5mm) lesions in my spleen and liver. We’re giving Enhertu another 3 cycles to see if these lesions are just just late responders and will repeat the scan in 6 weeks.
I have very mixed emotions about all this, I want to be happy with the good news but all these new lesions are worrying me sick. My hospital offers me free therapy to deal with anxiety but so far me and the therapist have different directions. Oh well it’s free so I hope that at some point we’ll align..0 -
@elena_p Thank you for the update. It must be frustrating to have different directions with your therapist. Is it possible that your liver and spleen lesions aren't metastasized breast cancer?
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@onlywhenitrains , well that was my question as well but the onco gave me that certain look and said that the images were examined by numerous experts and they wouldn’t share these news if they didn’t have a high level of certainty.. Of course, the most accurate way to know is to biopsy these areas but having already done a liver biopsy (thanks, Kisqali!), I’m in no hurry to do a second.
The most probable scenario is that, since there was a one month gap between my previous scan and beginning Enhertu, the progression must have happened then. Due to my high Ki-67 these lesions can appear in days, let alone a month 🫤. Then the treatment probably worked but there is no reference scan.I think that 3 more cycles of Enhertu will give us an opportunity to see if there is any shrinkage, it may be a challenging treatment for me but I still believe in its effectiveness, after all my thoracic area is clearing up. For someone who has never heard any good news since my original diagnosis, this is huge. If it doesn’t work then we’ll probably move to Xeloda.
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