Looking for Zejula users

I’ve been on Zejula for about 6 months now, as maintenance after surgery and chemo. I started on 200 mg and have had to interrupt it twice because of low platelets; then about 2 months ago I developed severe anemia and was given 4 units of blood. No change in dosage. Despite the transfusions, I was again extremely anemic less than a month later and had 2 more units.  This time I requested trying 100 mg, and while the hemoglobin did go down, it has stabilized, at least for now, at a level that I can still do things with! My C125s have been normal since early in the chemo and I get monitored pretty closely, so hope things will be better now.  Anyone else have similar issues with anemia on niraparib?

Comments

  • Welcome @nwcarol I'm glad to see you found us and also that you seem to have responded well to your first-line treatment.  Hopefully the Zejula will set you up for long term stability.  

    We have quite a number of members who are on or have been on Zejula who I expect will weigh in once they see your discussion topic.  In the meantime, we've had a fair amount of discussion about Zejula in past so, if you haven't already, you might want to type in some key words like Zejula, Niraparib, anemia etc. into the search box in the upper right of your screen to pull up some of those conversations.  

    I"m also ccing Tracy Kolwich, @TracyOCC,  our OCC Regional Director and oversight on OVd in case she can fill in some blanks for you. If I recall correctly she spent a fair bit of time this past year collating user experiences with the drug so may have some insights to share. Or  feel free to reach out to her directly at OCC,,,,,[email protected]

    I hope you can get your side effect issues resolved and that you continue on a path to wellness.  Keep us posted on your progress and do reach out any time with questions we can help with or to share your own experiences that others may find helpful.

    Best wishes...... <3


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