Anyone starting brand drug, Enhertu?

The last day or two of explosive D and general feeling gross seem to have passed and I just powered through a baked potato with two huge heaps of full fat cottage cheese and didn't feel like stopping at all, so I am hoping things are on the up. UTI appears to be clearing - I never got the burning urination need, just a low fever and a sense of things not being 'right', also not quite making it to the bathroom in the middle of the night in time once or twice. That seems to have passed too.

Just dropping by to suggest bone broth as an idea for queasy times. I was on the couch last night thinking of what else we had in the house that sounded appealing when I remembered I had some cartons of bone broth in the cupboard. What a win! I wanted something hot/warm but brothy, you cant get much better than that. Added bonus it should help my a) low sodium levels and b) gut rebuilding and protection. A mug was very comforting and I felt better after.

Finally, it seems all my pain has been due to the lymphadema. Glad we found that out and I can hopefully get off the opiates merry go round.

Day 13 here, lets hope Im on to the sunny highlands of week 3. Fatigue levels fine, just wish I could sleep better, sleep is currently a mess. My fingernails are exceptional though- growing fast and strong. No idea what that is about but Ill take it.

@sondraf I’m so glad the D stopped and you’re feeling better from the UTI. I don’t know why, but now I’m craving a baked potato. I made an egg sandwich for dinner, and it’s not sitting right.

My coffee in the morning has been tasting so bad. My husband said it doesn’t taste any different. I’m hoping my taste is not going to be affected. I am already so picky. The egg sandwich wasn’t appealing either. I only ate half. I could live on chips, though. Lol

I’m in a cycle of eat, get nausea, food digest, feel like I’m starving, and then start all over.

@weninwi I tried melatonin one time, and I had the most vivid dreams. I couldn’t do it.

Appetite seems to be coming back, we are making chili this weekend and I was drooling looking at recipes and then doing the online grocery shopping. Got stuff for sundaes and new high protein smoothie recipes. Had chicken dippers nugget things, baked potato and cottage cheese, and a milkshake for dinner like a five year old. Got a week before next infusion so hoping I can pack on a bit here and at least stay level weight hopefully. Also had a scan of chest as MO wanted to check lungs. Overall feeling pretty good just a bit tired from activity today, I think my right glute is functioning for the first time in 18 months!

Ive had some throat burning as well post food/some beverages, but nothing bad enough that I wanted to vomit it back up. Are you on regular omeprazole or just in case? I was wondering if it was indigestion but it does seem to go away eventually in my case. Its not comfortable for sure, all that from a bowl of cereal! Was it a sweetish cereal? Ive had issues with sugar causing discomfort so I dont eat it/want it (most of the cycle) - I finally got some Rice Krispies the other week because that sounded like the most benign, low sugar cereal possible compared to the open Bran Flakes, Crunchy Nut, and Life boxes.

I feel like I read somewhere on another forum about Enhertu causing significant headaches so maybe recheck the list of side effects.

@sondraf Don’t laugh when I tell you the cereal. It’s like eating cardboard, but I like it. It was Shredded Wheat. Lol. I slept a ton yesterday. I woke up this morning not feeling too bad, but the nausea has kicked back in. I’m trying so hard to stay off meds for it. I just started back on a regular daily Omeprazole. The Pepcid isn’t working. It looks like the a Omeprazole isn’t either. I don’t have the burning anymore, but I was hoping the nausea would stay away. I’m on Day 11. The bad nausea didn’t start until Day 9. I hope it simmers down soon. I am going to ask for a dose reduction.

@vajra13 I’m sorry you’ll be joining. I hope you don’t have too many side effects. Please keep me posted.

sondraf - Has your oncologist ruled-out pneumonitis/interstitial lung disease (IDL) as a possible cause of your low grade fever? A woman who posts on the Enhertu facebook page developed pneumonitis (IDL) after a few cycles and her symptom was low grade fever. Same or similar occured for another woman who I've gotten to know - symptom was low grade fever.

@wenninwi - yes, Im clear in the lungs, just had a CT last week to confirm. Im hoping she will be paying more attention this time as low grade fever is what I had when I was developing significant lung inflammation on Everolimus. The fevers seem to have stopped so who knows, but that is a great reminder, I had forgotten about that.

@monicasiv Hi. I’m sorry your mom is having the inflammation. Can you say where her mets are located. Did the memory issues just start when she was put on the steroids or before? Two thoughts. If yes to my question, I don’t know if steroids cause memory issues, as I haven’t had issues like that with steroids. I do know that chemo can cause fogginess and chemo brain, and this drug is partial chemo. The other thing is, if she has had the memory issues before the steroids, has she had a brain MRI to make sure there aren’t any mets to her brain? Please keep me posted on how she’s doing.

@monicasiv I can’t even imagine how scary that is. I’m wondering if maybe she has a problem with both medicines together. The first infusion of Zometa, the Zoledronic acid, can be rough. After my first infusion, I felt like my bones were going to break for three days. It was very rough. I’m just wondering if your mom had a reaction to it that it would take a week. It usually happens within a day or two. I had chills, a fever, and horrid bone pain. I also have skull mets. Did she have both infusions on the same day? I’m wondering if that’s too much for her system at once. She was handling the Enhertu okay before that? Please understand I’m not a doctor. I’ve also just started and only had one session of Enhertu.

There is an Enhertu Facebook group. Can you join and ask if anyone else has had this problem.

I’m so sorry she’s going through this.

Also, do you think she could possibly be allergic to something, maybe the steroid or the Zometa? The itchy sounds like an allergic reaction. I would call doc and ask if she could be allergic. Did they not address the itchiness when she was in the hospital?

@monicasiv I can’t even imagine how frightening and frustrating it is. I think an antihistamine might help the itching. I’m sorry, I don’t know what could be causing her to be irritated by noise, but if she’s confused, it may have to do with what’s causing that? I hope that once she’s off the steroids, the confusion goes away.

Here is the Facebook page link. I don’t think you can just click on it, so hover over it and copy and paste it into a browser. That should work. I hope you can get some responses there as well. Please keep me posted.

https://www.facebook.com/share/g/qDX2S9rNT9KdPaRa/?mibextid=K35XfP

This is really helpful. Thank you so much for sharing this. It always helps to talk to other people. The nurse did mention that she might experience flu-like symptoms with the bone-strengthening treatment, but I didn't expect it to be this bad. I'm going to keep praying that it's just a temporary side effect of the treatment. I'll definitely keep you posted. Thank you again! ❤️

monicasiv,

So sorry about all the symptoms your mother is experiencing. It's always hard to figure out if symptoms are due to the cancer or the drugs, but I concur with kbl that getting both Zometa and Enhertu on the same day was probably too much for your mother. I always get my Zometa infusion on a separate day, even though it means an extra trip to the infusion center. I also encourage you to join the enhertu facebook group. It is very active. I hope your mother starts to feel better soon. I'll remember her in my prayers. Keep us posted.

@kbl Thank you for checking in. She’s feeling much better now with no more itchiness or memory lapses, but she still has some occasional breathing difficulties. I think receiving both treatments on the same day was too much for her body which likely triggered symptoms like fever, shaking, fast heart rate, low blood pressure, confusion, vomiting, and diarrhea. I plan to talk to the oncologist about the possibility of spacing out these treatments. @kbl and @weninwi Do you normally receive them a week apart?

Also, my mom developed grade 1 lung inflammation due to this chemotherapy, so the plan is for her to finish her steroids (prednisone) and take a 6-week break before restarting Enhertu at a lower dose. I’m hopeful this break will help her. The last two weeks have been tough, but it’s a relief to see her gradually returning to her usual self.

Thank you all again for your prayers. 💗

kbl,

The 80% dose for me has been well tolerated. I swing between mild constipation and overly soft stools, some mild fatigue, but not much else. I haven't yet decided to go ahead with the port, but at least I've overcome some of my mental/emotional resistance and have decided it would be a reasonable choice. Now it is more of a timing decision.

@monicasiv I’m so glad she’s doing better. To me that definitely points to the meds being on the same day. I actually don’t get Zometa any longer. I decided to get off after four years. I hope the break also helps her continue to get her strength back.

@weninwi Maybe we can compare notes if we both get a port. I have to research where to get it.

@sondraf I’m glad things are starting to get better with your infusion but sorry you have a low hemoglobin. That is great that your lump is shrinking. And there is nothing more frustrating than when staff screws up.