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?
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.
Background…I was diagnosed with stage 3 ovarian cancer May 2021, I did 7 rounds of chemo starting June 7, 2021 with surgery after 4th treatment. Surgery was Sept 7 a total hysterectomy and defaulting.
Any advice, words of experience are most welcome
Perhaps others of our community may see this and weigh in with their own perspectives or have similar experience to share.
Good luck either way.
My thoughts were…My platelets would most likely go low again, I would have to off Zejula again then wait and go on a lower dose. All the while going for blood work every week. I was enjoying my life not having these weekly appts and check ups I was sleeping better and had a better over feeling when I was off the Zejula so I was having some side effects….minor and manageable but still there. I started taking the lower dose on Fri. so not enough time to tell how I am reacting to it. I have energy, went for a good walk yesterday and today got my bike out and went for a short ride. It feels good to do my normal activities and not have the big C hanging over my every thought.
Tomorrow morning I will go for bloodwork and have my Cancer Antigen levels tested. Will see what happens after that