Zejula

larcon3922

I was declared in remission in March 2022 after 6 rounds of chemo , total hysterectomy, clear CT, and CA125 of 9. This week I received my 3rd month of zejula. I take 2 (100 mg) tablets. My side effects are rash, insomnia, and constipation. The worst part is my platelets were trending down every month to 10 yesterday. I have read and read articles trying to find solution to this. Today I was told to stop it. After lunch yesterday, it was 65 after lots of hummus and tahini. After platelets transfusion, this morning it went down to 38. I also started 3 days worth of beet juice which was the answer to insomnia and constipation. I would like to continue taking it at a lower dosage to see it might help. I have not done my CA125 for three months, is this normal? What do you think?

thatblondegirl

Hi, Larcon

No, not having a CA125 for 3 months isn’t normal. My understanding is that they should be checking that every month. I haven’t had any problems with insomnia….well, different than I’ve suffered for 20 years! ;)) My new best thing for constipation is popcorn!

You’ll have a hard time getting much information here because I’m about the only one on the Uterine Board who takes Zejula…..mostly because 1) I’m the only Fallopian Tube girl here, and 2) it’s prescribed to ovarian and FT patients. The Ovarian Board is usually very, very quiet and there are very few women there who have taken it. I’ll try to help.

I’ve written different posts at different times here about my experience with Zejula, but even I would have a hard time helping you find them! I started a thread “PARP Inhibitors” over a year ago. I just looked at it and I didn’t post anything past about how it was going after my first few weeks. A LOT happened after that.

I started at 200mg. I was fine for about 3 months. Then the bottom fell out. My biggest side-effect was fatigue. My monthly blood work was fine until it really, really wasn’t. Hemoglobin = 7.3. My PCP, not my ONC, sounded the alarm bells and got me to a hospital for 2 units of blood. It revived me, but 4 weeks later I crashed again. I didn’t need bloodwork to tell me I had a big problem. The same problem. I got 2 more units of blood.

Now….during this entire time, my ONC kept saying, “Take the 200.” I asked this question multiple times and NEVER got an answer: “Is that his plan? For me to live on blood infusions?” He and his office repeated this phrase, “Only you can decide if you want to keep taking it,” and “If you think you’ll feel better you can stop taking it.” I ended up practicing screaming at them, “I WANT to take it. It’s not my choice! My BODY is saying NO!”

I finally figured out….Google “GSK Zejula protocol,” or “Zejula bloodwork protocol.” You should do that! You should be able to find some nice little charts that delineate very specifically what the DRUG MAKER recommends for problems with side-effects, specifically bloodwork problems. So, following the chart, I took myself off Zejula for a month. I resumed at 100mg per day. It had already been proven twice that my body couldn’t tolerate 200mg. I’m happy to report that all my bloodwork has held up beautifully and I feel good.

And a VERY reliable source, told me that both she and GSK believe that 100mg IS effective. My ONC had more than implied, more than once, that taking 100 was the same as taking nothing, and that is NOT true! (Well…we’ll see!) I’m 15 months post-chemo and to the best of my knowledge still NED!

I only do bloodwork every 6 weeks now, but I’ve been taking it for over a year. They want me to do it every month, but I refuse. I’ve been poked enough!

I hope this helps. I hope your doctor’s office is of more help to you than mine has been.

I wish you the best! Congratulations on NED!

😎, A

NoTimeForCancer

Thank you for sharing with us all, thatblondegirl (A). As treatment continues to change your response will help all of us.

thatblondegirl

Thx, NoTime! I try to state facts that might help someone and try not to push! I feel like I always need a big disclaimer…Like, so……Here’s what I know, but “I’m not a doctor! See your doctor if you have questions!” 😂

Here’s a headline! I GOT MY FIRST POST-CHEMO HAIRCUT TODAY!! 🎊🎉👏💃😃 Hair is below my shoulders, but still a million different lengths, so it was just to try to trim the ends & clean up my quite unintentional Farrah-70’s shag-layers! When she (my long-time hairdresser) was done I said, “Oh my God. This is a GREAT Day! I didn’t think we’d ever get here!” We both cried! Happy Tears!

larcon3922

https://csn.cancer.org/discussion/comment/1698480#Comment_1698480

Thank you so much for taking the time to respond. So happy for you and your haircut too. 2 more months for me and I will be stylin’ my hair too and do away with my wigs.