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Anyone taking neratinib (Nerlynx) for cervical cancer HER2 mutation?

Posted by margitdill @margitdill, Feb 17 3:30pm

Hi, I am at the 2.5 year marker of my cervical cancer treatment journey. I am about to begin treatment with the pill, NERATINIB. It targets the HER2 mutation which I have. I understand that it produces severe diarrhea and has to be taken with Imodium. Has anyone had experience in managing all this? I’m fearful of “episodes” and embarrassing situations and need advice to help prevent such things. Thank you so much for your help.

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Colleen Young, Connect Director | @colleenyoung | Mar 15 8:38am
In reply to @margitdill "I would like to add something about my taking Nerlynx and see if anyone can help..." + (show)
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I would like to add something about my taking Nerlynx and see if anyone can help me. Besides having two bouts of diarrhea (the common expected side effect of this drug,) I started having bloody urine. Thus coincided with starting the drug then got worse, progressing from spotting to heavier bleeding, I have asked 3 of my doctors: WHY AM I BLEEDING? No answer yet. I have researched and found that bloody urine can be a side effect of Nerlynx but I would rather have a doctor confirm this than me trying to answer this question. I am next going to try to have the pharmacist at Texas Oncology answer this question. But if anyone here knows or has had this symptom while on Nerlynx, please share. Earlier the pharmacist said that it could interact with Eliquis (which I take) but it was still ok to take Eliquis( just monitor for symptoms. Thank you!

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@margitdill, did your pharmacist have any insights about the blood in the urine? Did they suggest continuing with Eliquis? Is the bleeding continuing? Less? More?

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margitdill | @margitdill | Mar 15 1:22pm

The oncology nurse said it was from the cancer … but it is in the urine … does not seem to be from the vagina. It has stopped now … it is still ok to take eliquis. My urinary stent needs replacing … signs are the spotting and the bladder pain. Thank you

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marlatc | @marlatc | Mar 21 11:19pm
In reply to @margitdill "@val64 thank you very much! So far the digestive issue has happened only twice. It’s not..." + (show)
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@val64 thank you very much! So far the digestive issue has happened only twice. It’s not every day. My oncologist advised reducing my dose of NERLYNX. So I’m doing that. It does make me feel yucky, however. A bit worse than chemotherapy.

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@margitdill
Hello,
I am at the two year mark since my diagnosis, first line chemo went great, was set to complete Keytruda/bev immunotherapy in May, but though my PET showed no cancer my great oncologist was proactive, biopsied an avid smaller-than-1cm area on my cervix and I will begin Tivdak or a clinical trial drug very soon. I just want to thank you for your calm posts, your “journey” sounds a lot like mine but you have made me feel that I can do this. May God be with us both and bless us with a break from this madness.

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Helen, Volunteer Mentor | @naturegirl5 | Mar 22 1:15pm
In reply to @marlatc "@margitdill Hello, I am at the two year mark since my diagnosis, first line chemo went..." + (show)
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@margitdill
Hello,
I am at the two year mark since my diagnosis, first line chemo went great, was set to complete Keytruda/bev immunotherapy in May, but though my PET showed no cancer my great oncologist was proactive, biopsied an avid smaller-than-1cm area on my cervix and I will begin Tivdak or a clinical trial drug very soon. I just want to thank you for your calm posts, your “journey” sounds a lot like mine but you have made me feel that I can do this. May God be with us both and bless us with a break from this madness.

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@marlatc Welcome to our Gynecological Cancers support group on Mayo Clinic Connect. I am heartened to know that you found support from @margitdill as she described her process through her treatment.

I wish you a break, too, from all of this. You r most recent PET showed NED (no evidence of disease) which is good news. When will start Tivdak or a clinical trial?

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