Ovarian cancer and use of inhibitor

FormerMember
FormerMember
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Hi I have been undergoing treatment for nearly eighteen months, I was diagnosed with ovarian cancer December 19, taken into hospital with chest infection next thing told I had cancer total shock as had no symptoms, and had felt well, it was whilst running bloods something showed up, anyway last year I had six cycles of Chemo followed by debulking surgery last July followed by two more cycles of Chemo. I went into remission in October but cancer back by January didn’t even make the three months. So back on Chemo for a further 8 cycles 4th cycle this week so should be scanned in next month, according to ca125 marker had come down by two thirds after first two cycles. So I am keeping everything crossed that may get away with less Chemo. I have spoken to consultant about going on an inhibitor, which he was hopeful I could go on as long as Chemo worked. I am stage three. Just would like some views on if it works well and from what I have read it’s side effects similar to Chemo. I must admit I have been lucky just suffering tiredness and lack of energy, lost hair first time round but haven’t this time round. So would just like some views. I am very possative person and really hope it works for me.

  • I'm glad you are stable Vicky. It's so good to have a rest from treatment as it does take it out of you. Hopefully you wont need any more.

  • FormerMember
    FormerMember in reply to newmay21

    Hi newmay21

    My consultant never mentioned telling me the results of my blood test, she just said that she will see me in four weeks time. I’m assuming if anything was wrong with the bloods they would phone me to tell me to stop taking the medication. I guess no news is good news.

    My consultant never mentioned telling me the results of my blood test, she just said that she will see me in four weeks time. I’m assuming if anything was wrong with the bloods they would phone me to tell me to stop taking the medication. I guess no news is good news.

    Hope swapping to the morning helps with your

  • FormerMember
    FormerMember in reply to newmay21

    Hi Newmay21,

    My consultant never mentioned telling me the results of my blood test, she just said that she would review me in four weeks time. I am allowed to take my own blood pressure at home and just email the readings. I’m assuming that if there was anything wrong with my blood is that someone would contact me. I guess no news is good news.

    I hope by switching your meds to the morning that will help with your sleeping. Fingers crossed your feelings of nausea do not get any worse.

    Janice xx

  • FormerMember
    FormerMember

     like you I have had 2 rounds of chemo , went onto Avastin but c125 went up after 7 weeks, another 5 cycles chemo  and now on dna inhibitor, started 1 month on 200mg and c125 went down from 13 to 11 then put on 300mg, have been on this for 2months and getting blood results next week. Yes similar side effects as chemo but hair is growing back very slowly, have had numb and tingling in feet and hands since 1st chemo

  • I don't know if anyone is still following this thread or not. I had personally stepped back for a while as there were some upsetting stories.                                                                                                                                                                  Anyway I have been taking Nirapabib/Zejula since June. I had some side effects at first but my parp nurse advised these would stop, and they did. The bloods and platelets were more of a problem but they are also stable now. So I now have no side effects. When I had my CA125 taken it has dropped by 10 points! I am ecstatic.                                  As I said I don't know if anyone is still following but I thought I would post anyway as I always like to hear positive stories and I thought it may be of help to anyone just starting nirapabib

  • FormerMember
    FormerMember in reply to newmay21

    Hi newmay21, 

    like you I stepped  back for a while, But feel it is important to share positive stories as well.

    I have also been on Niraparib Since the beginning of June and I have had no side-effects whatsoever other than a little bit of tiredness. My bloods and platelets have been absolutely fine throughout as has my blood pressure. Apparently all these factors are critical for remaining on the medication. My CA125 level has remained at 10. I currently feel very well and like my old self. Apart from the visual reminder of my Stoma, I could almost forget that There was anything wrong with me. 

  • Hi curlynan I was hoping you would reply. I'm so pleased you are still tolerating the tablets and your CA125 levels are stable. Long may it continue. 

    Good luck for the future, and stay well!

  • FormerMember
    FormerMember in reply to newmay21

    Hi newmay21, thank you for posting. I too read some of the older posts and was getting worried. I had my last and sixth chemo cycle on 3rd August, I have had the all clear and will be starting Niraparib in a few weeks time. After reading the long list of side effects, I was thinking to myself, oh great, it will be just like being on chemo all over again! My haemoglobin and platelets dropped after each chemo but having read both your post and Curlynan's too, I feel abit more positive to give it a go.

  • Hi, I was diagnosed with Stage 4B ovarian exactly a year ago next week.  I have had six rounds of chemo after third had debulking op of full hysterectomy plus peritoneum.  CA125 level is now at 30 and I am on PARP (Niraparib) but only 100mg as my blood counts are very low.  No side effects, well rubbish bloods,   

  • I am on Niraparib but do not have any side effects, but rubbish low blood cells so only taking 100mg instead of 200mg 

    Anything is worth a go to try and beat this alien that dares to live in us.