Anyone starting brand drug, Enhertu?

pmw , I was surprised how unwell I felt for over a week, walking was an effort. Sorry I cannot give you any advice I hope you feel better soon.x

Re: eating blamd food early morning. I have a very small appetite and can't eat much at a time. In the afternoons I frequently drink a vanilla Premier Protein as a boost. I have started drinking about half of one in the middle of the night when I wake up to go to the bathroom. Doesn't matter if it's refrigerated, just tastes like milk. But it keeps me from being woozy in the morning, as it's a long time between dinner and breakfast.

I have just had round 3 . No hair loss {not cold capping] . No sickness, I am taking lanzoprazole [sp?] this week which has helped prevent the gastro pain I felt from my throat to my bottom before . No constipation or explosive D , which I had on the 2 previous rounds. I do feel feeble and have moderate fatigue; if I do something then have to sit and rest. Last round I felt 'normal' enough to drive and go out and about on my own in the last week. I was considering asking for a dose reduction , but as the side effects have lessened or medical staff are suggesting how to prevent them, I have changed my mind for now . I am hoping its working for me and you .x

I haven’t heard that but definitely understand needing or wanting a break. Very interesting

I had my 2nd Enheru infusion today; scheduled one every three weeks.

I walked out of the chemo straight away, we went to the supermarket, I made dinner at home. Last time I went into a coma on the couch for 4 days so this is certainly an improvement.

Also met with my MO today who is attentive, she reduced today's Enhertu dose by 30% from last time. Every MBC med I've taken so far has been reduced on subsequent visits, they're just too strong for me.

This is my fourth drug in 12 months, a year - Lynparza failed, Xeloda failed, Vinoralbine failed. And while that was failing so was I.

I am cautiously optimistic. My worst complication from all of this breast cancer has been the peritoneal fluid swelling which can be unbearable when not in control. Enhertu is supposed to specifically address that symptom and I sure hope it does.

Three weeks from now, do it again. Fingers crossed for all of us that this stuff is as good as they think it is.

I had 3rd infusion of Enhertu. Only significant SE is fatigue, which has really gotten me down. Liver bloodwork showed slight improvement. Still use oxygen for SOB & coughing while sleeping and lots during the day when I'm home. I purchased POC (portable oxy concentrator) and use that for my 3hr drive to MO. Medicare wouldn't cover portable one for months & months, so DH found refurbished one on internet. Very happy to have it. MO prescribed cough syrup w/codeine to take before bed. Seems to reduce coughing when lying down & rolling over. I'm trying to add more activity to my days & see if I can regain some energy. MO decided to do next scans before 5th scheduled imfusion instead of 4th to give drug more time to work. I've been having thoracentisis every 2 weeks, which would be tomorrow. Don't feel the need yet, so good news there. Overall, slightly more optimistic.

I had my 4th round of enhertu last week. I asked for a lower dosage as I was just beginning to get some energy back and then it was time for the next infusion. lethargy and fatigue was really effecting my q.o.l. Apart from that my hair is still growing, i am not getting sick , lanzoprazole is controlling my gerd, a couple of incidences of diarrhea controlled with loperamide ,so all bearable side effects. I do get grumpy and short tempered in the first week after the injection. Strangely, I had to stop driving as my speed perception was altered, I felt as if i was speeding and i was only doing 25 miles per hour., anyone else noticed this? I am hoping I 'recover ' quicker this time around. Wishing everyone a good week .

Denny, I have no experience with UTI’s but I’m sorry you’re going through so much. I wish you relief and quick

PNW- I get my 3rd infusion tomorrow. Two weeks after my first infusion my symptoms from bowel and peritoneal mets seemed to disappear! By the third week, my markers went down 1000. I'm so relieved with the results of this drug so far. Scans will hopefully confirm the progress end of April. Is your peritoneal fluid symptomatic of your mets? Where did you read that this drug is for these kind of symptoms? I too am cautiously optimistic. Do you have Lobular BC?

I am Francie from the Monday virtual MBC group. Known for my positive attitude (effervescence) and hand modeling of Udderly with 20% Urea.

I had my first round of Enhertu a week ago. My MO gave me infusions of medicine prior to Enhertu to prevent vomiting. They just give you preventative medicine up front at my hospital, so that is helpful.

I am taking stool softener and Metamucil because I was very uncomfortable not having my daily bowel movement. This is helping.

My problem that I would appreciate input on: I can do one activity - focused work or walking 3/4 of a mile, and then an hour later, I MUST nap for 3 hours or so. I am hoping this won't continue forever because my MO said I could stay on Enhertu for 2 years with an infusion every 3 weeks.

I lasted on Xeloda for one year, but the foot/toe pain became too severe. What bothers me the most is that I took a Medication Vacation so we could travel and my feet could heal. My tumor markers jumped in just 2 months of no Xeloda. Even though I felt like a "non-cancer" patient during my Medication Vacation, this showed me that I am only as good as my next medicine.

Enhertu is my 5th line of treatment. I found the tumor in my breast on 1/1/20. I am de novo and went through Ibrance, Verzinio in 10 months each, had internal bleeding with Affinator, and lasted one year on Xeloda - full dose.

I am HER2 LOW. My CA 27-29 tumor markers are only at 150, but still, on Xeloda they were down to 50. My MO said that 150 will be my new baseline, and that my markers should start to go down in a few months. She said not to worry.

I guess what is bothering me emotionally is that I am only as good as my next MBC treatment. It really struck me that I have a terminal disease, and yes, I am grateful for new medicine, but maybe I won't live 15-20 more years. What a bummer! I love my retired life.

I have six bone mets, none (knock on wood) in my organs.

Can you give me some advice about the fatigue? Will I start to get used to Enhertu, or is this going to be how I feel?

woodlands- tough to tell with first dose. I had my fourth last week.MO reduced steroids before chemo infusion. I could certainly tell I was much more tired the next day, on the positive side also less constipated. I took Phillips pills, found them gentle but effective. I too have a difficult time with activities, especially walking uphill or for longer than a half mile. I find a nap in the afternoon necessary, but I also find it is annoying to wake up and feel so out of it. I don't have the magic formula yet. Will have my first scan since taking this drug in a couple of weeks.

Thank you to all who replied. I was able to get Mr. Poopy working again with Metamucil and some stool softener pills.

I now have a dry cough that I will get checked out on Monday. I plan on having my second Enhertu infusion on Tuesday.

Today's topic: I am running my had through my naturally curly hair, and hair is coming out. Lots. Not like the time my head hurt on Day 17 after I had an infusion in Jan 2020 when I was misdiagnosed with regular breast cancer. Just hair coming out.

I know I shouldn't be concerned, especially since after 3 weeks my tumor markers have dropped from 150 to 111! But, how much hair loss can I expect?

It's always something....

Feeling happy and blessed to be alive. I am 65 years old. I have definitely had a good run. Hoping for some more years of feeling like me.

Woodlands- my hair started shedding in week two of the second cycle and shedded for about 6 more cycles to really thin. but, oddly enough at cycle 5 it started growing in again. I am about to start cycle 10 and I still wear a hat (can't stand wigs) and by summer at this rate I would be ok with a short hairstyle I think.

The original study showed 1/3 had grade 1 hair loss- but, as more people take it - it had jumped to at least 50%. I heard a lecture yesterday that said 10-15% had total hair loss. I would call mine grade 2- eyebrows and eyelashes not affected.

Pnw- I am sorry to hear your news and I hope that it turns around-

I will say that a blood transfusion will make you feel much better (I have had many ) and that would help with your overall well-being. keep us posted

Nopink, I have a VERY gurgly stomach, but no liver involvement. I assume it's just gastric.

I belong to a FB group for Enhertu, and there has been talk lately about the drug (the bag) needing to be covered during infusion and also some kind of filter used and special tubing. Anyone here get this done? It explains on page 5 of the PDF, under administration.

pp-us-enb-1094_enhertu-mbc-2l-infusion-guide.ashx (enhertuhcp.com)