I started taking Niraparib in September 2020 I was taking them for five months, I had no side effects at all and the tablet did not work for me, my CA125 continued to rise and I restarted carboplatin for six cycles which also did not work as my CA125 continued to rise. I am now coming to the end of 4th line chemotherapy having been in an 18 weekly programme of paclataxol which has brought my CA 125 down to almost remission but not quite,I am hopeful that the last two treatments will do that. I was so very disappointed that the Niraparib did not work, I am BRCA2 positive and had such high hope's after reading reviews about this "Game Changer" drug. I am happy for all those ladies that are taking PARPS that are having success with them. I just wish that it had worked for me and pray that one day soon there will be something to help me.
Disappointing result from Niraparib: I started... - My Ovacome
Disappointing result from Niraparib
I am BRACA negative and was taking rucarapib from end of December have just been taken off them as no activity in my bone mets but new activity on lymph nodes in my chest. Like you am disappointed. Didnt have many side effects, tho constipation was a constant problem. Have had a couple of weeks break and went and got some sea air, which has done me the world of good, but back to reality to discuss where I go from here. I sympathise with you as it does seem from what I read BRACA positive ladies do well. Be good to hear what your next treatment will be and I send you a hug and positive thoughts x
Thank you Lizzieanne, I know we are all different but can't help but wonder why it works for some and does absolutely nothing for others, it is so very difficult. I am so sorry for your ongoing difficulties. I am waiting for my high risk breast screening appointment which will be an MRI and mammogram hopefully on the same day, my wonderful consultant has already arranged my CT scan and we really need all the scan result to be available by the 22nd of July when I have my next video consultation to programme my ongoing treatment. We are hopefully going to try an estrogen blocker as my tumours are hormone driven, will it work...who knows but we just have to keep trying and while there are treatment I will never give up fighting. Good luck to you, I will be thinking of you. Xx
Thank you and I wish you a positive outcome. X
Hi I started taking Olaparib and like you my CA125 continued to rise. Was on it five months and was so disappointed when it had not worked. I will have to wait 6 weeks for what they call a wash out and then will restart chemo. It’s good to hear that weekly taxol is working for you that will also be one of my options. Either that or cisplatin/Gemzar. Wishing you all the best with your treatment and let’s hope it gets you back in remission x
Thank you for your reply that was so kind of you, do you mind if I ask you what a wash out is, I haven't heard of this before. Best wishes to you I love your profiles name, mine is because before I started this wretched journey I had red hair Auburn really but was ginger I liked better. X
Hi the wash out is just a break really to get Olaparib out of the system before starting more chemo. May I ask how you are managing the weekly Taxol? Kath x
Hello Kath thank you for that information I thought it might be something like HIPEC where hot chemotherapy is put into the stomach cavity. I have enquired about that as it is used for Ovarian/peritoneal cancers as well as mysathilioma cancers. I will literally try anything at all to get this wretched disease under control and keep it there just so I can have a bit of a break from the chemotherapy. By next Thursday I will have had 36 rounds from start to now. My current treatment was 18 weekly sessions of paclataxol which at times has been a bit of a challenge I have had two interruptions due to the development of a very itchy rash on my arms and feet and am taking antibiotics for fungal nail infection to all my fingers and thumbs and two of my toes. That said on the whole Kath I have coped quite well.Love and best wishes to you. Xx
Thank you for the info. Please let me know how you get on xx
I was also very disappointed with Nariparib. I was diagnosed in January 2020 and had six cycles of carboplatin and paclitaxel followed by debulking and another two cycles of chemo. I started Nariparib in November but CA 125 began to rise and the constipation problems plus other symptoms crept back and a scan in March showed progression of disease. I am now about to have my fourth round of caelyx and carboplatin and from my latest scam it seems that the cancer has shrunk a bit. My CA 125 is reducing and now 17. I'm BRCA negative but my once thought it was worth a try. I'm wondering I what treatments there are available when I finish the sixth round of caelyx and carboplatin, I'm glad your CAn125 is responding so well and you are almost in remission but can't help what next for us ladies for whom PARPs haven't worked.
Just wondering why you were on Niraparib and not Olaparib as brca pos ?? Good news that your present treatment is working .
Jennifer
Hello Jennifer,There was an article in the newspaper about Niraparib being the "Game Changer Drug" for BRCA positive ladies, I cut it out to show my consultant who said I could try that after my chemotherapy if I had gone back into remission.
I had carboplatin and caelyx in October 2019 and started the drug in May 2020. I have been lad to believe that I could only have one Parp but I will ask about Olaparib when I next speak to my consultant. His next plan is to try Anastrazole which is to block the production of estrogen as my tumour histology shows they are hormone driven, I hope it works I really do, I will continue to forge forward, my personal mantra in never give up, never give in and never roll over for this wretched disease. I will let you know how I get on when I soeak to my consultant on tgec22nd July. Love and best wishes to you. Xx
I think you can only do one PARP , just seemed odd he didn’t go for Olaparib? Your ONC may well be following best course for you as he has all info to hand , but I think I might be a bit tempted to go for 2nd opinion at this point ??? . I’m with you on the never give up ! Take care and go to your appointment with loads of questions Jennifer
Hi, sorry to hear that niraparib and carboplatin haven't worked for you .... but great that the weekly taxol is effective. As you are BRCA2 positive, would you be able to try olaparib after your chemo has finished? Just wondered if olaparib may work for you even though niraparib did not? Olaparib does seem to be the PARP of choice for BRCA positive ladies.
Hello WoodyBI am going to speak to my consultant about Olaparib, I had been told that i could only have one Parp which is how I ended up on Niraparib.
He is going to try a hormone blocker called Anastrazole as my tumour histology shows them to be hormone driven and hopefully by blocking the estrogen it will starve the cancer cells. The theory sounds great, I pray to God it will work.
Love and best wishes to you WoodyB
Hi . They are developing a new drug for BRCA positive people. They should start trials soon. An article about it was posted here a week or two ago. Don’t despair! Xx
Thank you Delia, I have saved that article to show my consultant, I dont know how you get onto atrial but it is my intention to ask him. Xx
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