hello, I am posting for my best friend who has advanced cancer which has returned after remission of eight years. She has asked her consultant (at The Marsden) if she can have the newly approved PARP inhibitor Niraparib but they have offered her Rucarabib instead. Has anyone now received Niraparib and does anyone have experience of Rucarabib (trade name Rubraca)?
Thank you all.
Caroline
Sorry your friends is unwell but I have no experience of either drug but want to wish her the best with the treatment
Thanks Suzuki and to you too.
Does your friend have ovarian cancer or is it a different cancer?
Pauline
clearityfoundation.org/for-...
I'd ask the consultant why they prefer Rucaparib for her. The link shows that not all PARP inhibitors work the same for all of us.
You could also use the search box top right on here.
This link is incredibly helpful - I haven't seen it before - I've been trying to pull all those results together from academic papers, so I am very grateful. That really does clarify things and gives me much more information to go on. Thank you so much for taking the trouble and good luck.
Hi Caro,
I have been on Niraparib for 9 months and it is working well for me - I still had tumours at the end of second line chemo (carbo caelyx) and not only has the PARP stopped them growing, they've reduced in size. Side effects are hard at first - or they were for me - but once settled become predictable and therefore (relatively, all things are relative!) manageable. My understanding is that rucaparib works in a very similar way and has similar side effects. Not sure why Rucaparib rather than Niraparib has been suggested, but sounds like Mac 27's link above has helped with that.
Hope it works well for you whichever one is prescribed
xx
Thanks so much Elizabethe, that's really great news. I'm so glad to hear all this 
Hi Elizabethe,
After much research, including talking to one of the doctors running the Rucarabib trial, my friend has decided to go with it as it seems as you said, the three Parp inhibitor drugs work in much the same way with very similar trial results. I wondered if I could ask you about your side effects.. Did they kick in immediately and completely flatten you, like chemo, or were they more gradual? My friend has her son's 21st birthday party on Saturday which she has been looking forward to for months, and she is worried that if she starts now, she is going to be completely clapped out by Saturday. It's really hard to know whether waiting a few more days will make a difference but it would be helpful (and maybe to others on here) to know how bad the side effects are and how you cope with them.
Thanks so much,
Caroline
I agree with Elizabethe.
The high start dose does seem to be responsible for a lot of problems people have and I don't really understand why they stick with it.
I had very very mild side effects for a couple of weeks only - not such as would interfere with a party.
And when my platelets plummeted I was unaware of it until I had a blood test.
I'd assume it is going to be okay and be surprised if it's not. x
Thanks so much for this , that's very reassuring! Can I ask what dose you started on? She is worried that her platelets will plummet as she had to stop chemo for this reason. Were you able to carry on taking it or did you have to take a break?
I started on 300mg which seems to be standard. After a month my platelets had dropped, although I was unaware of this and I had a platelet infusion. I suspect I wouldn't have been given this if I hadn't been going off on a long-haul flight. I had to have a pause with repeat blood tests and after 2 weeks I went back on it, but on 200mg ( all negotiated internationally!) I had a later 2 week break too down to low HgB (though there were probably other reasons for this).
I've tended to have trouble with blood counts and my normal is pretty low. So I determined I was going to research and shore them as far as possible. The medics tend to imply nothing can be done.
In particular to support platelets and neutrophils, since November I have been drinking papaya leaf tea. There seems some basis for this as it's used in relation to Dengue Fever.
All I can say is that since starting this regime, my platelets have been holding up within normal range. The neutrophils are a bit up and down and below normal range, but a fair distance from the 1.00 that seems to be critical for treatment to go ahead.
I had problems with platelets on carbo alone and on carbo gem.
This is probably more info than you need, but I hope may encourage your friend ( who, by the way, is very lucky to have you as her researcher!)
Hi Caro,
I think the side effects came on more gradually than chemo. As far as I can remember I felt absolutely fine for the first few days, maybe a week. Then by the end of the second week my blood counts started to drop and the nausea and fatigue started. Side effects were fairly debilitating for the first couple of months, then my dose was reduced from 300mg to 200mg. So yes, they did build up - but once the right dose was arrived at things settled down and now pretty stable, predictable and manageable. So based on my experience - and of course we're all different - your friend should be fine to go to her family party on Saturday. On the other hand, I did delay starting mine for a week so that I wasn't starting them while away on holiday, just in case there was a problem. My oncologist was absolutely fine with that and it has made no difference at all to them working. You just have to start them within 12 weeks of your last chemo treatment. So that might be another option, and at least then she won't have the psychological stress of will there/won't there be side effects by Saturday! I don't know what your friends current situation is but I had active tumours at the time and it still reduced them to almost nothing.
Hope that's helpful, happy to answer any more questions, and I really hope it works well for her and the side effects are manageable. Oh, and that its a great party! Those family milestones are so important and such a boost.
xx
Hi Elizabeth, hope you are still well and coping with this weather ..! I have another question if you don't mind.. my friend has just heard her blood count is dropping - and I think this is exactly what happened to you. She is coming off the drug for a few days and then I think they will reduce the dose. (she's on 300mg) This does seem to be the way doesn't it? although she has coped well with side effects. She has active tumours (main one is in her liver) and wants to know how much yours shrunk on Niraparib . If this Q is too personal don't answer! But I think would help her to keep the faith that it will all settle down.Thanks so much for your completely invaluable help and support . X
Elizabeth, I can't thank you enough for taking then trouble to write all this. It is so so helpful to know what's in store - as you say these family milestones are incredibly important and this has been months in planning! It's so good to hear the drug has worked well for you, and such a boost to hear that. Marvellous to hear it has reduced your tumours. Thank you so much again.
Caroline XXX
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