Starting Enhurtu

[ndastrogal]

My Xeloda run lasted for 18 months. I am HR+, HER2 (low) with brain and bone mets. My next treatment will be Enhurtu and it starts next week. Would be grateful for any feedback from folks who are on it, or have been on it. My oncologist has about a dozen patients on it and he feels they are tolerating it well. Thanks.

[SeattleMom]

I’ve been on Enhertu for about 3 months. Biggest side effect for me has been extreme fatigue for first week after infusion. God bless you! 🙏🏻💗

[13Dancingdiva]

I’ve been in for about 6 months. Maybe I’m a little tired sometimes. WAY better than Xeloda. I HATEDXeloda. Worse side effects I’ve ever had on anything

[ndastrogal in reply to 13Dancingdiva]

Any hair loss? Thanks.

[13Dancingdiva in reply to ndastrogal]

I’m taking taxol with it so the hair was gone with taxol

[DorothyR in reply to ndastrogal]

I did not lose any hair. I was bald to begin with due to having wbrt. My hair is growing back at a pretty quick pace.

[DorothyR]

I have been on Enhertu for 10 cycles. I couldn't take xeloda.I have fatigue for a few days after infusion nut nothing extreme.

The first round of Enhertu I got pneumonitis so my dose was adjusted after a round of steroids.

I too have bone and brain mets and am stable on all my CT scans and MRIs.

Best wishes.

[Bettybuckets in reply to DorothyR]

I thought a pneumonitis would be cause for getting off for good…. They can just carry on with a lower dose? Are you more at risk for getting it again? How do they monitor for that?

[DorothyR in reply to Bettybuckets]

Oncologist put me on a 4 week steroid taper then a chest CT. Lungs were clear so he reduced my dosage. I have not had any more flare ups. He does monitor me about every 2 to 3 months by CT and since I see him every 3 weeks he does listen to my lungs. Also, i have a echo of my heart every 3 months. So far so good.

[Bettybuckets in reply to DorothyR]

how do you feel on it? Fatigue? Punk? Or good? My Dr is afraid of trying that drug but my Dr in Nz advised it as next for me. But in Nz it isn’t available!

[DorothyR in reply to Bettybuckets]

After my first infusion I had about 1 week of fatigue off and on. I had some mild nausea. I think the pre meds helped with that. (Steroids and anti nausea meds)

I have noticed that now I seem to have more energy and the fatigue passes quickly without nausea.

I feel almost normal again.

When I started Enhertu the cancer was affecting my bone marrow and I was in bad shape. It worked quickly to resolve the problem.

Best wishes

[Bettybuckets in reply to DorothyR]

wow! I am so happy for you and hope this continues for a lo mg time. Gives us all hope.

[s_yenju]

I have been on it for 8 months. In the beginning, the side effects seem very minor. I was able to act like a normal person. By the time goes by, my fingers and toes skin became darker. My hair falls more and became thinner. It did work on me until progression. My tumer marker drop more than hundred on first six cycles. Good luck for you.

[Shafight]

Enhurtu did so well in the studies that they got a standing ovation when results were announced at the conference. It is now approved for HR+and lower Her2. I see it in my future. Trying other things first

[Bettybuckets in reply to Shafight]

me too..,my doc wants to see what real life experience will bring with it. He thinks the studies showing 10% pneumonitis will be higher. Says that would be a pain to always be looking and worrying for it. So save for later.

[Lnlc]

hi! Enhertu was a tough one for me. Lots of the regular side effects including nausea but the most major one was fatigue. I was scheduled for the infusion every three weeks and two out of those three I was pretty much stuck in bed. But there was improvement in the lungs and the bones and a little more lighting in the liver. Onc agreed that we got what we needed from Enhertu and discontinued. Now I’ve been on a drug holiday for the last couple months and it’s been wonderful. That may be likely to change as I have a brain mri this week. And then I’ll have a decision — to go back on treatment and the likely life altering side effects or remain off meds and work With the palliative doctor to treat symptoms

It’s a tough choice I’m sure many of us face.

I just turned 72 and celebrated at a Florida beach resort with my husband of 44 years, our two sons, their lovely wives and our three grandchildren. I was first diagnosed in 1995, thought I was clear and then it metastasized in 2013. The treatments got harder and more life affecting. Im trying to not think too much about what I might do since I don’t really have any info prior to the mri and subsequent discussion with my doctor. But I have loved the last couple months of semi-normality and ms be it’s time to let nature take its course? Right now I use a wheelchair, a walker and a cane to get around but have begun walking short distances independently

I’m sure you understand.

[Widdershins3]

Enhertu was by far the best, most effective treatment I've had. No troublesome side effects and an astounding drop in my CA 15-3 test results. When I developed 'ground glass opacities' in my lungs recently and was taken off of it, I was devastated. I'm hoping for a bad-reaction-free course of treatment for you, because this drug is a game-changer.