Niraparib - More than once ?

[Flute_7]

Morning everyone

I was given Niraparib in 2020 when first diagnosed and lucky enough to achieve 11 months before 1st reoccurrence, I’ve since had further reoccurrences. However, whilst I understand the general rule is that Niraparib is only given once as a maintenance drug, I wondered if anyone has an Oncologist who does things “outside the box” and has offered it for further reoccurrences, if so how did you get on with it or is it definitely not given more than once?

I will ask at a meeting next week and expect to be told it is only offered once but thought I would ask everyone here first.

Many thanks.

[Skyeplus]

I was on Niraparib until June 23. Basically I was told that a recurrence means the drug has ceased to be effective. I am back on carbo/pac . I have been told that as far as Niraparib is concerned that's it.

[Flute_7 in reply to Skyeplus]

Morning Skyeplus

Thank you for your reply, yes, I thought that might be the case, just wondered if protocol etc may have changed over the last couple of years. Let’s hope an alternative becomes available soon 🤞🏼🤞🏼

Good luck with your journey xx

[Leniko in reply to Skyeplus]

I was told the same about Avastin. It worked for a few years, then stopped. Bummer. Maybe ask your doc about Avastin (Bevacizumab)

[Flute_7 in reply to Leniko]

Hello Leniko, yes Avastin has been mentioned and may be a possibility if I have enough shrinkage, so keeping fingers crossed. Good luck with your journey xx

[Leniko in reply to Flute_7]

I will pray for you and hope you find the right potion. Was radiation discussed?

[Flute_7 in reply to Leniko]

I did ask about radiation when first diagnosed and was told at the time it didn’t work for Ovarian cancer, however I am now at a different hospital with a different consultant, so I will ask again. Thank you for your prayers xx

[Hidden in reply to Leniko]

Hi,Avastin didn't improve my Overian, now I'm back on another chemo called Ceayx on my first of 6.

Rita44

[Leniko in reply to Hidden]

Sorry to hear. I was informed not everyone responds. Maybe I’ll ask Onco about caelyx

[Flute_7 in reply to Hidden]

Oh, I’m sorry to hear Avastin didn’t work for you. Fingers crossed your new treatment goes well for you. I guess it just proves how different we all are xx

[Hidden]

Hi,

I haven't any experience with Niraparib all I can mention is, if one particular drug doesn't have enough effect, then it's back to chemo? Then after your chemo you will be offered another one or two combinations.

I hope this will be the case for you.

Best-

Rita44

[Flute_7 in reply to Hidden]

Thank you Rita44, that definitely seems to be what is happening. I seem to go from one chemo into the next for which I am extremely grateful, I do not want to become a statistic, there is so much I would still like to do. Hope all is going well for you. Xx

[Morini]

I went to a Prof Jayson talk and seem to remember that PARPS are only given once because they become ineffective. Would they try a different PARP?

He was doing research into Avastin. It works differently and may be better prescribed for a period that depends on the individual rather than fixed amount it is now. He also thought it could be prescribed multiple times for recurrences because there isn't resistance as opposed to the one off tgat it currently is. Is Avastin a possibility for you? Not sure if that project is still active?

[Flute_7 in reply to Morini]

Hello Morini. Thank you for your response. That’s really interesting to know, I didn’t know that Avastin could possibly be given numerous times.

Avastin has been mentioned to me but it very much depends on scan results. If there is enough shrinkage then I may be offered it. Keeping everything crossed as sounds like it could be the way forward if I’m lucky enough.

Hope all is going well for you. Xx

[Sargenet]

I took it for 2.5 years…but I did not recur while on it. then 2 years later my cancer came back. My new doctor wanted to try a PARP again and she couldn’t get approval (military doc). So we did chemo and it started to come back right after I stopped. Did more chemo and then she fought for me and I got another PARP but the only reason she agreed and pushed for it was because I didn’t recur while taking it. I think if you recur while on a PARP they feel like it doesn’t work for you and that’s why they might not approve another. But also I am in the US.

[Flute_7 in reply to Sargenet]

Hello Sargenet, that makes sense, I achieved 11 months before my cancer returned for the first time, so sounds like Niraparib will definitely be off the agenda. How amazing for you thought to achieve 2.5 years whilst on it. Really glad you were offered another Parp, hope things are going well for you. Xx

[Tealgirl7]

I was reading the other replies and can't answer what they do in your country. I am in Canada and I just started a new drug trial. I took Niraparib for a year. I showed progression of disease. I am now on a new study that involves taking the Niraparib with avastin. I am stage 4 and was diagnosed in 2006. I have never been disease-free. There is always lymph node involvement. There is so much hope out there. I wish I had been given some when I was diagnosed. I was told two years Max so moved to a smaller house and quit my job that I loved. I'm not really complaining I'm happy to be here. It gave me the opportunity to live life to the fullest.I think in the end everyone is different and responds differently. I love this site . So many people understand what you're going through and the support is wonderful.

[Flute_7 in reply to Tealgirl7]

Hello Tealgirl 7, you are so right . So many people have been kind enough to respond to my question and all the responses have been really helpful and humbling.

Reading your response has given me huge hope. Wow, diagnosed in 2006 with stage 4 and given 2 years yet 17 years later you have proven that it is possible to learn to live with cancer and live life to the full, that’s exactly what I’m doing, so fingers crossed that a positive mindset will help. Very best of luck for the future xx

[Tealgirl7]

Wishing you the very best and keep up the fight. It's all worth it. I had my first treatment in the trial on Wednesday. I have so much pain in my neck which I think is from the stress that I went through in the last few days and also a headache which I think is from the avastin. After saying all that I am still happy to be here. Let me know how you are doing as you go along. Sending you lots of positive vibes