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Enhertu

atoth17 profile image
16 Replies

Hello,

I just started Enhertu a week ago and have had a really hard time with nausea, diarrhea, and just not feeling well. Does anyone have positive stories that will encourage me to keep going with this drug, right now I can’t imagine getting another infusion.

My team is aware and have been working with me so I definitely have clinical support.

Allison

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atoth17 profile image
atoth17
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16 Replies
DorothyR profile image
DorothyR

Hi atoth17,I have been on Enhertu for 8 cycles.

I started out with a little vomiting but that passed. My Oncologist reduced my dose since I did have a bout of pneumonitis.

The cancer in my bones started effecting my bone marrow and I was in bad shape. I have now become stable and I am feeling good and getting back to doing my normal tasks.

Maybe it ould be good to discuss reducing your dosage with your medical team.

Good luck to you. I hope you start to have the side effects become less harsh.

I can say Enhertu did work quickly and saved my life.

atoth17 profile image
atoth17 in reply to DorothyR

Thank you for your reply and encouragement Dorothy. I am thinking a dosage reduction should definitely happen. Good luck to you!

Ursula_I profile image
Ursula_I

hi Allison

I have had three cycles of Enhertu so far, the first cycle I definitely felt the most 'washed out' and really fatigued, and a little nauseous. It's got much better, though my hair has noticeably thinned 😭.

I would encourage you to keep going if you can, maybe with a reduced dose? Presumably they are giving you meds for the nausea?

I wish you all the very best

Lucy

atoth17 profile image
atoth17 in reply to Ursula_I

Thank you for the encouragement as well, I'm definitely going to be asking for a dosage reduction.

Another Allison! I am talking with my doc on the 6th and I suspect we will be switching from Taxol to Enhertu so all of your feedback is so helpful to me. I am sorry to hear about your side effects. I have been trying not to take prescriptions when I have the side effects you describe so we have stocked up on the anti- dia stuff like Bananas, ginger ale, apple sauce, and rice and I use the Ginger chew for nausea. My chemo nurse was annoyed that I don't take the prescriptions but the side effects sound much worse. Please keep us up to date on how you do.

atoth17 profile image
atoth17 in reply to Iwasborntodothis

I hear you, ginger beer has probably been the most effective than all my anti-nausea meds but I can't drink soda all day. :)

Iwasborntodothis profile image
Iwasborntodothis in reply to atoth17

totally agree too sweet. are they giving you Nulasta or Grannix? I see on my portal that the doc has just pre-authorized Grannix

atoth17 profile image
atoth17 in reply to Iwasborntodothis

Not yet, it seems to be the GI issues that are plaguing me (still, after eight days), not sure what the WBCs look like.

kearnan profile image
kearnan in reply to Iwasborntodothis

I was given Zofran (?) I believe for nausea for another new med I had been on in the past. The rx for Zofran did absolutely nothing when the nausea kicked in. I then googled online and read that room temperature ginger ale plus saltine crackers was good. So I did that when feeling nauseous and it worked so much better for me.

DSmomCA profile image
DSmomCA

Hi atoth17,

I’m about to have cycle 8 of Enhertu. With the first few cycles I received Zofran & Dexamethasone and had nausea and loss of appetite for the 3 weeks between cycles. Oncologist d/c’d Zofran & switched to Emend infusion & Dexamethasone with no dose reduction of Enhertu. Still have some appetite loss for first week or so, but able to eat and my appetite improves over the 3 weeks before the next infusion.

I’ve been through so many treatments, (Ibrance, Atezolizumab trial, Piqray, Everolimus, Keytruda & Abraxane ) over 4 +years but still functioning pretty well. I find the Enhertu more tolerable than some other treatments once past a week or so of “upset stomach “. Seems to be tamping cancer down and since it is one of a few drugs that “crosses the blood brain barrier” I’m hopeful it can work on the brain Mets as well.

Hoping you can find the key to managing the nausea before you’ve been able to give Enhertu a chance to work. Keep up the fight!!

atoth17 profile image
atoth17 in reply to DSmomCA

Our path in terms of meds seem quite similar, I am encouraged by your message. Thank you!

SeattleMom profile image
SeattleMom

Hi, Allison,

I was switched to Enhertu on December 23, after some progression. So far, I have had four infusions (every 21 days) with the next one scheduled at or around March 10. With each infusion, I am also infused with anti nausea medication. I have typically had a time or two of nausea around the 3rd or 4th day following the infusion which I treat with an anti-nausea pill. My experience has also included a lot of fatigue for the first 7 or 8 days following the infusion, plus a small amount of hair loss.

I am prescribed an injection of Filgrastim on each of the two days following the infusion. These can be injected at home and are available free through a Pfizer patient assistance program. They help to counteract the depletion of low white cell counts following the infusion.

Let me know if you have any other questions. I hope you are able to manage your side effects. So far, this treatment has served to lower my tumor markers and reduce the size of a couple of cancers in my liver. Apparently, it has led to pretty positive results in many patients. God bless you, Allison. The worst of this disease is learning to live with side effects; we are never out of one treatment or another. You are in my prayers!

XXOO Linda in Seattle

atoth17 profile image
atoth17 in reply to SeattleMom

Linda,

It is so good to hear from you! I think we are also on similar paths and possibly at the same CC? Fred Hutch? I get my second infusion in March 15th, we are switching up some pre-meds and they are going to keep me on Dexamethasome a little longer.

This drug has so many wonderful things said about it, I hope this is worth it. 🥴

Allison

RLN-overcomer profile image
RLN-overcomer in reply to SeattleMom

Greetings: Sister/Warrior/Advocate😀. It is good to know the (nurses)/medical staff can infuse the anti nausea medication as they also infuse the Enhertu medication.😇 I am happy to know Enhertu is working for you, and so many of our other Sister's/warrior's, and that you have no debilitating side effects amen. Have a wonderful day😀

Samsontheodore profile image
Samsontheodore

On my 8th infusion of Enhertu and tolerating well! Tumor markers have dropped quite a bit and tolerate this better than other methods. Xeloda was great, but quit working and left me with sore feet that have finally healed! I hope you also have better luck with this relatively new drug that is incredible I think! Good luck!

atoth17 profile image
atoth17 in reply to Samsontheodore

I was also on Xeloda and am not missing the peeling hands and feet. I’m encouraged by your success! 😊

Allison

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