enhertu

[CTGirl1962]

I had my first dose of Enhertu last Thursday. I was fine for a few days and now I’m completely wiped out, bad diarrhea and I don’t even feel human. Does it get better? I am praying that it does! Any help and or support you can give me will be gratefully accepted. 🙏🏻

[Charlie_99]

So sorry to hear this!! Doesn’t sound good at all. Can you talk to your doctor about lowering your dosage for next time maybe? Understand they start with the higher recommended dose (which is like 225mg/kg which seems like a lot) but can titrate down if you’re not tolerating it. You need to feel at least human as that’s no quality of life.

[Pbsoup]

have you joined the Facebook Enhertu private group? It’s full of ideas for side effect management as well as success stories.

I hope you feel better soon.

[CTGirl1962 in reply to Pbsoup]

I just joined the group. Thank you!!! 🙏🏻🩷🙏🏻

[Chamisa]

It gets better. The middle week of treatment is usually the worst. The week before infusion is pretty good, from my experience and from those in the Facebook Enhertu group I’m in. Search for Enhertu (DS-8201A) on Facebook to find the group.

[CTGirl1962 in reply to Chamisa]

Thank you!! I’m in the group!!! 🙏🏻🙏🏻🙏🏻

[daniellebrooks13 in reply to Chamisa]

thank you for address!

[Warrior77]

Yes! It gets better! I had my first dose two weeks ago. Was fine for two days then crashed. Slept on and off for two days straight then it took a few more days to get back to normal. I didn’t have diarrhea, but did have indigestion for a few days. I will say sleeping for two days scared the heck out of me. I’ve never had fatigue like that. You’ve got this. One day at a time.

[CTGirl1962 in reply to Warrior77]

Thank you!! You give me hope! I’m still extremely fatigued, but hoping this will pass. 🩷🩷🩷

[Warrior77 in reply to CTGirl1962]

I have my second treatment next Wednesday. Now that I know what to expect, I’m kind of curious to see how it plays out. The first one is always the hardest (and scariest!)

[CTGirl1962 in reply to Warrior77]

It is!!I pray that it gets easier for us!! I have a household to maintain and people who depend on me. I can’t even take care of myself at this point. Thank God I have a saint for a husband. He is my saving grace. 🙏🏻🙏🏻🙏🏻🙏🏻

I’ll be awaiting a response from you!! I pray that it’s so much better moving forward! 🩷🩷🩷🩷

Where do you have treatment? I’m at Yale Smilow in CT.

[Warrior77 in reply to CTGirl1962]

I grew up in CT! I'm in Florida now and get treatment at Orlando Health in Ocoee, FL. I adore my oncologist and his team.

I have a saint for a husband too. It's been hard, but I've learned to let go and let him do for me. I too maintain our household, so we talked about it, and I made a deal with him. He lets me continue as normal and I will ask him when I need help. It was odd at first, but it got easier when I realized that letting him do for me is letting him show me he loves me. Also, I'm retired and he still works, so I have all day to space out my household chores. That way it all gets done and I don't wear myself out. 😊

[CTGirl1962 in reply to Warrior77]

It sure helps being retired!! I am, too!! I lived in Ft. Myers for 14 years. Raised my son there and when I met my husband, moved back to CT. My son’s dad lives in Stuart. We love Florida, but staying in CT is what we need to do for now. We have my dad and his mom living with us. It is a motley crew for sure!!! I’m so happy we hooked up. I’m praying for better days. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🩷🩷🩷🩷

[mariootsi]

Praying you will start feeling better

[CTGirl1962 in reply to mariootsi]

Thank you, Marianne. This one is kicking my butt into the next stratosphere!! 😢

[mariootsi in reply to CTGirl1962]

Oh geez. IM SO SORRY. SENDING LOVE AND HUGS.

[Figletf]

When I get my Enhertu I feel bad for a few days after the pre meds wear off.ThenbI feel fatigue but no nausea or bowel problems

[CTGirl1962 in reply to Figletf]

How long does your fatigue last? I’m going on 5 days!!!

[Chamisa in reply to CTGirl1962]

For my first infusion, after the premeds wore off, I felt like the fatigue lasted until right before my second infusion… But it was all skewed because in the middle of it I had port placement surgery 🤷🏻‍♀️and so the recovery from that impacted things. Then, after my second infusion, I ended up having a lumbar puncture that gave me a spinal headache that lasted for four days so that messed me up also. This third time (this is day #4) seems to be going pretty smoothly. 👍

[CTGirl1962 in reply to Chamisa]

I’m praying you are through the worst of it!! 🙏🏻🙏🏻🙏🏻🩷🩷🩷

[Figletf in reply to CTGirl1962]

I have fatigue continually.I have been taking naps most days.I am 77 so I imagine I might be fatigued even without Enhertu. I am still able to ride my indoor bike an hour each day,because I am seated. It is routine house cleaning and meal planning that tires me out.

[CTGirl1962 in reply to Figletf]

I’m so sorry to hear this. I just returned from my clinic. I was scheduled for an Xgeva shot today. My blood pressure was very very low. They hydrated me and my blood pressure went up a bit and I feel better. I’m thinking hydration is key!!! 🙏🏻🙏🏻🙏🏻

[Shafight]

about a week after my first 2 Enherto infusions, I got severe diarrhea for a full day. No Imodium would stop it. Then I was given a prescription and it really has helped. It gets better!!!! I’m in Italy right after 4th infusion!

[CTGirl1962 in reply to Shafight]

You’re in my favorite place!!! Enjoy!!! ♥️♥️♥️

[Figletf]

How are you feeling today? Hopefully better🙏I had my Enhertu yesterday so I expect to feel okay until my pre meds wear off.

[CTGirl1962 in reply to Figletf]

I expect that I would feel much better if my blood pressure was higher. It is so low. Otherwise, besides feeling weak, I’m ok!! Thank you so much for asking!! 🩷🩷🩷🙏🏻🙏🏻🙏🏻

[mizcaliflower in reply to Figletf]

May I ask what were your "pre meds"? I had dexamethasone and Zofran. I didn't know either of those lasted having only the one dose.

Hopefully you're feeling fine.

[CTGirl1962 in reply to mizcaliflower]

I also had those for pre meds and I have a prescription for oral dexamethasone. I take 8 mg a day for 3 days after my infusion. I’m also going to ask for additional hydration on my infusion days. I heard that helps!! 🙏🏻

[Figletf in reply to mizcaliflower]

I had the same.Usually around the third day after the infusion I get slight nausea and very sleepy

[mizcaliflower]

CTGirl, I am right there with you. I started on Wednesday, the third of July. I too am beyond exhausted. The diarrhea is so bad. I'm afraid to leave the house. All I do is sleep.

This is awful.

God bless you

[CTGirl1962 in reply to mizcaliflower]

I’m continuing to pray!! I’ve been taking my blood pressure and it’s so low. My husband went out and got me some pedialyte and I’m feeling better. You might want to try that. You need to replenish your electrolytes. After almost two weeks, I’m starting to feel better.

[mizcaliflower]

That is great news. I am also feeling better. Still so tired and sleepy, but the diarrhea is over.

I've been taking an electrolyte supplement also. Not pedialyte, it's sort of like emergenC.

I ordered it from Vitacost.com It has less sugar than emergenC. I used to take emergenC, but it has 7 g sugar, so I looked for something with less. (sugar) And this is organic cane sugar. I'm sure it's not perfect, but when I researched, it seems to be the best quality that I can afford.

It's Trace Minerals; Electrolyte Stamina Power Pak

1200 mg vitamin C with only 1 g sugar

Electrolytes are definitely essential.

Currently trying the guava passionfruit. I usually have orange or tangerine or raspberry. I tried something different. It's delish. (I like guava fruit)

I'm so glad you're feeling better. I'm starting to feel just ducky!

I'm going to ask for a lower dose when it's time for my next infusion.

God bless you, All the best,

Deborah

Blue Billed Mallard. in a local pond.

[CTGirl1962 in reply to mizcaliflower]

Thank you for all this information!! I appreciate it. I’m actually going to be receiving my 4th infusion next week and things have slowly gotten so much better!!! I’m praying for little to no side effects this time!!

P.S. My blood pressure STILL refuses to increase. I live with low BP constantly. I think this has a lot to do with my energy levels!!