Niripairb

[megb246]

Hello,

I have just read an article about Niripairb suggesting that if you stage 3 or4 and bc a negative , have had reoccurrence that this parb only gives you three month break before you reoccur again ? Has. Anyone hea d this .Thanks Meg

[Lyndy]

Hi MegThis sounds like an average figure perhaps? I think it’s true that Parps were designed for those like me with a BRCA mutation but it was subsequently found that some non BRCA women could benefit from them. If you are stage 3/4 you may be more at risk of recurrence.

Having said all that... there’s no knowing how individual patients will respond. Some seem to have no benefit others seem to do well.

I wasn’t sure whether to have Avastin.... I still don’t know if my long remission was helped by it or not. But given that we are all trying to avoid recurrence... you might feel that anything is worth a go? Sorry that’s probably not too helpful! xx

[megb246 in reply to Lyndy]

Thank you Lyndy for answering I am so stressed by decision as I feel so well at the mom ent I am a natural worryer though and-yes desperate to have more time with family and adorable dogs so will give it a go ❤️❤️

[fair-rosamund in reply to Lyndy]

I'm in month 4 of niraparib and oncologist advises remission length is variable may be weeks to years. First month nit great with nausea and feelings of anxiety, but these settled with no dose reduction. Go for it - if you start, you can stop but if you don't give it a go you'll never know if it would have helped. Hang on in there and keep walking the dogs.

[SUE7777]

Hi Meg, This parp has only just been approved so there wouldn't be that much data but it would be worth talking to your onc regarding success rates. I'm most likely going to give it a go if I get offered as it may work well and if not I won't have lost anything. Take care Sue xx

[bamboo89 in reply to SUE7777]

That's not strictly true Sue - in the UK, its recently been approved for all women who are not BRACA positive as a maintenance treatment after first line chemotherapy, but the drug itself has been in use for some years - its just that previously, you could only have it after a recurrence and if you responded to platinum based chemotherapy for second line.

Megb: It might only postpone a recurrence by 3 months or by 3 years or longer; the research I did reported an average postponement of up to 5 months in Stage 3 and 4 after second line chemotherapy, but that's an average figure, it doesn't mean it will only work for up to 5 months in all women who take it. I'm on it, Stage 4b, following a recurrence, but I started it a few weeks late for various reasons, so my CA125 had already started to climb following the chemo - it does seem to be reducing the CA125, has stopped it rising every week, so give it a go because, as fair rosamund says, you can just stop if it's still making you feel awful after the 3 month settlement period.

Miriam

[SUE7777 in reply to bamboo89]

Thank you Miriam I didn't realise the exact criteria, I will try it if I'm offered.I had front line and am on Avastin maintenance, the first scan showed NED but then 2 months later my CA125 started climbing, had another scan and it was growing again so this was the original tumour and not recurrence not sure if that's relevant. My team decided as new growth was very small keep on Avastin which was working but not completely until end of course and then chemo but I'm hoping to be able to try the parp as this new situation has arisen but I may have to have more chemo first.

Sue

[bamboo89 in reply to SUE7777]

All recurrence is because of the original tumour I'm afraid... hope the Avastin fobs off the next round of chemo for as long as possible, and after that's done, if they don't mention it, ask to try Niraparib. It won't prevent another recurrence, but may postpone the need for more chemo for a lot longer... how long it may postpone it for is a bit like wondering how long is a piece of string, so its kind of suck it and see🤔🙂 If NICE has finally approved it for all and is funding it, then they must believe it is effective.

M

[SUE7777 in reply to bamboo89]

Thank M

[Lesinbeds in reply to bamboo89]

It’s lovely to hear your positivity of niraparib. It is the not knowing and how long which I find really hard!! Take care xx

[megb246 in reply to bamboo89]

Thankyou Miriam I am giving it a go I'm just fed up of feeling ill bit also want to be around as long as I can xx

[megb246 in reply to SUE7777]

Thanks Sue have spoken to oncologist and decided to give it a go x

[Lewisriley47]

Hi I am stage 4 and braca negative, l was diagnosed in 2012 and have had 4 different chemos over that time. I have been on Niraparib now for just over 2 years with not too many side effects although the dosage has been reduced due to my kidney function acting up. I am to have a scan in the next couple of months as my ca125 has gone up to 51. I just wanted to say we all react differently, but if you are offered this part l would certainly give it a go . Best wishes Pam x

[megb246 in reply to Lewisriley47]

Thank you Pam x

[bluepeterella]

The research I have read is that if you are BRCA negative then Niraparib will give you on average 3 months MORE before recurrence. If without it you would have gone a year without chemo, this would bump the time up to 15 months (on average). The on average bit is important because it means some people might go much longer then that.

You can be brca negative but have a different mutation which can also respond well to PARP drugs. They are learning more about them all the time, so I suppose we are stepping slightly into the unknown. I agree it is a much harder choice for us brca negative ladies.

[megb246 in reply to bluepeterella]

Thankyou after a hissy fit have decided to give it a go as need to be around for my rescue dogs xx

[bluepeterella in reply to megb246]

Oh you too! I have 2 rescues here.

[megb246 in reply to bluepeterella]

They are my world x

[rosebine]

I also have a rescue dog and she is rescuing me at the moment,I really feel that without her I wouldnt want to go on especially since lockdown, at least I have to take her out daily I fear I wouldnt go out at all otherwise. Im waiting to go on a Parp and have been worrying about its efficacy. This thing is one long worry isnt it, at least its made me realise that a lot of the things I used to stress about dont matter.

[megb246 in reply to rosebine]

I have stressed so much about the parb but decided to give it a chance after encouragement of ladies on this site . Fingers crossed I don't get too sick as have to walk my doggies .. good luck to you Rose hope all goes smoothly with your treatment x

[bamboo89 in reply to megb246]

Just a quick update re Niraparib - I heard yesterday that my CA125, which was falling a few points week on week with the drug, has now gone down 7 points lower than it was when I finished chemo back in July, and a CT scan has shown the cancer is still stable, no new growth anywhere. That is the effect of Niraparib, so yes, worth giving it a go, and working through any teething troubles with it for the first few weeks if you can. Good luck..

Miriam

[megb246 in reply to bamboo89]

That is brilliant news Miriam so pleased for you x