Zejula

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  • hi all,
    i was on Zejula, following chemo and surgery as I am also BRCA negative. I had a hard time with side effects - terrible insomnia, headache, rapid pulse, slightly raised BP. etc. - so dosage was reduced to 100mg, which I tolerated. Last July my oncologist received results of tumour testing for a sporadic mutation of the BRCA gene, which was positive. I was consequently switched to Lynparza, 600mg. Apart from slight nausea at the beginning, I am tolerating a full dose of Lynparza much better than I did the Zejula. I had to repeat my request for testing of the tumour tissue for a sporadic mutation before it was done and am glad I persisted. It’s worth doing!
  • My apointment tomorrow cannot come soon enough. My CA125 levels are now up to 196. Was at 94, 1 week prior to starting Zejula 4 weeks ago. They haven't been that high since April of ladt yr. I been off Zejula for 1 week and some of my levels are dropped even lower like wbc now at 3.6 from 4.8 last week. Not sure if Zejula is working for me. Only been on it for 3 week. And 1 week off as of today.  Been experiencing some fatigue a bit of indigestion nausua. Some left lower pain.  Going to see if another ct is warranted. Some of my other levels have either dropped or went up. Well we will see what happens when I see my oncologist tomorrow afternoon.
  • Hi @Eileen I’m reading this later today. Hope that you get some answers tomorrow and that things are taken care of. I’ll be thinking about you. We are all in the same boat so to speak. 
  • Thank you @Cecile21. I will keep everyone updated. I will try to join in the Thursday tea time.
  • Well just had my meeting with my oncologist and she will be ordering a scan. She said she did notice my ca125 have doubled. We went over my blood work. She doesnt want to give up on zejula just yet. I will be starting 100mg of zejula daily. I mentioned whats the 100mg going to do if the 200mg didnt help. My oncologist then did mention sometimes the ca125 levels do elevate before they level off. Being that my ca125 levels was  elevated 1 week prior to me starting zejula and that being off zejula for 1 week.  I tried to see if I can have. Ca125 level test done weekly like my blood work that we are continuing to do. To see how much they are going up weekly. As of right now i estimate my ca125 levels after 5 weeks from my last ca125 test are going up by 20.5 weekly. She said no the test is too expensive and that they get their hands slapped so to speak with doing it monthly. She said the next 4 weeks will tell us what we need to know. If it isn't Working then i would be classified as platinum resistant and would have to go on another chemo like caboplatin and avastin. We did go over some of the side effects. I did mention i was doing really well on my last chemo regiment carboplatin and abraxane. My oncologist mentioned yes u did. I did say to her that i  would kinda of like or hope to go back on it or try it again. She said when was your last chemo. I said end of nov. Mmm well if we can get u past the 4 month mark we could probably try it again but it is too soon right now. My oncologist mentioned. So this is where i am at right now.
  • Hi @Eileen , It sounds like you have a plan going forward and I hope the wait for your next CA125 finds your result levelling off closer to the reference range. I certainly sympathize with you about not having the CA125 done weekly. I don’t always agree or sometimes question what my oncologist decides for me but have learned during the past year that I need to trust him and that works well for my peace of mind. I will be waiting for your next update. Take care. 
  • @Eileen I can sure appreciate your anxiety.  We've all been through that...it's almost a constant every time we feel something abnormal or a test result seems off. But it sounds like you have a good oncologist who has a plan and already looking at differing options pending the outcome of the next few weeks.  Try to have patience....I know that's easy to say and harder to do though. But what seems like it's taking ages to move things forward is really quite fast in comparison what I've seen. As for the CA, it's not a reliable test. Any type of abdominal inflamation can set it off, not just a  tumor, nor is the score in direct correlation to the size of a tumor if there is one.  My CA back at the end of October was 9500, yet both of the nodules they measure for me were still in the millimeter size.

    It sounds like you have faith in your oncologist so, like Cecile21 said above, place your trust in her.    
  • Thank you @Fearless - Vol Mod for your strength and encouraging words. Yes i do have faith in my oncologist and trust her completely. She has been upfront with me from day 1. Yes i do have a few nodules they told me measuring up to 4mm and another one below those measuring 6mm. That was back in dec 16. 3 weeks after my last chemo. But of course the radiologist never tells you how many. 
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