Looking for Zejula users

nwcarol

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?

Fearless_Moderator

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......

suesage

Hi I had my last chemo on Nov 17, 2021  I started on Zejula Feb 7, 2022. I was taking 200 ml. I had to stop taking it on March 4 as my platelets dropped way down. Now after taking a break my platelets are in the normal range. I had a phone meeting with my doctor this morning and was told it would be okay to go back on Zejula. She is leaving it up to me wether I go back on the 200 ml dose or go down to 100 ml. I wasn’t having any major side affects from the drug until the platelets dropped so I am a little undecided what to do. I was feeling good and living a regular life until this blip.
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

Fearless_Moderator

Hi @suesage The situation you describe is not unusual.  Were it me , given you had no other side effects from the Zejula at 200mg, I'd go back on it at the same level.  If it causes any new problems you can always go down in dose or stop at that point.  

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.  
  

suesage

Hi Fearless….thank you for your thoughts, I appreciate hearing your input. I have decided to go on 100 mg. I could not find any hard evidence that it would make a big difference. My doc did say they always try to give the highest dose one can tolerate.
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

Fearless_Moderator

Good luck @suesage and reach out if you need anything from me or the community.  And enjoy that bike ride!

Keepcalmandbreath

Hello @suesage - I hope you are feeling fine and enjoying your normal activities. I’ve just posted my experience with Zejula on a different thread (also called Looking for Zejula users). I was on Zejula for about 7 months, and after a short period of taking 200mg, I was switched to 100mg because my white blood cells could not keep up with 200mg (I am also petite and understand that with this drug, it matters what your weight is). I tolerated Zejula well, and would say that did not have to change anything in my life; kept working and active (walking, fitness classes); had a good appetite and slept well. One thing though that I attributed to this drug was that about at 6 month mark, my bowel movements slowed down and I had to make an effort… My bowel movements got back to normal as soon as I stopped taking it (I had 3rd recurrence and am currently going through a chemo treatment). I’ve read a lot about this drug and studies have shown that some women stay on this drug for years and doing well. Take a good care of yourself and all the best to you. 

missvixx

Just  coming here to follow. I'm hoping to get approved to start Zejula next month! That said, I'm not expecting miracles since my bloodwork hasn't been good enough to even get regular chemo...