Hi. I have three more sessions of Carbo/Caelyx, then all being well will be put on a parp inhibitor. I am BRCA negative so know that not all parps are suitable. Does anyone know how the decision is made between Olaparib, Niraparib etc. (I think there is one beginning with Rub too)
I would like to know what you have found successful or not, and what the side effects were like.
Many thanks. Jenny
Hello Jenny - My understanding is that Olaparib is offered to BRCA patients only, Niraparib and Rubcarib are offered to everyone. I tried Niraparib but it didn't work for me, however we are all different, the plus side was I didn't have a single side effect. Good luck x
I think what Lynn said is right. I’m in the US and on Olaparib following carbo caelyx for first recurrence. Here the main thing is showing a partial or complete response to platinum chemo. One thing I’m curious about is that in the UK people seem to get tested only for BRCA whereas here we and our tumors get tested for other mutations and for HRD, homologous recombination deficiency. The studies on PARP s show that people without BRCA but with HRD also do really well on PARPs but not as well as BRCA positive people.
I'm sorry I don't know much about parps or how the decision is made for brca negative people except that I had heard that it is considered good if you have relatively high levels of estrogen - I am not sure if this is only applicable to certain types of OC. Please someone correct me if I am wrong. However, your post was interesting to me as I am coming up to the end of chemo treatment for a first recurrence which appears to be working. I have been wondering where I will be going from here. No talk of maintenance treatment as yet. Let us know how you are getting on and, whatever decision is made, I wish you the very best of luck. Jackie x
Are you on Carbo/Caelyx? Good luck with the future and let us know if you are offered maintenance. I am keeping my fingers crossed but three more infusions to go before we know if it's working.
Jenny
Yes I am. Last session next month. Having a bit of a tough time atm with magnesium levels dropping drastically. Had to have three IV drips 12 hours each 😕 before they could get it back up again. Carboplatin is the culprit. Have had last two sessions reduced by 20%. Hope it's sorted now. I was also told I have a pulmony embolism. I now have to inject myself with Enoxaparin once a day for God knows how long. Is there anything else thus evil disease wishes to throw at me - I honestly don't know anymore. I just don't seem to have tolerated chemo quite so well this time. Oh well I am sure things are much my worse for someone else somewhere in the world. At least I only have one more session to go for now. Take care and I will let you know how things will go. 🤗. Jackie x
Hi Jenny watch this and you'll be an expert. Sue xx ovacome.org.uk/webinar-reco...
This link is so interesting and useful. I had already heard a little of the info but I had not quite made the connection with parps. So thanks for posting this. Jackie x
Hi Jenny, I was diagnosed February this year. Just finished 6 cycles of taxel/carboplatin and had debulking operation in July. I am lucky enough to be NED and in remission, BRCA1 positive I've been on Olaparib for 3 weeks for maintenance. No side effects so far.
Having read so many posts saying how well they've responded to whichever one they're on, has given me hope that it may work for me too.
Hope you have the very best results , good luck with whichever Parps treatment you're on
Jan xx
Hello
I was diagnosed with stage 3 C HGSOC in March 2016, had standard treatment. Recurred in Late 2017 and had a bowel resection and a further 6 rounds of chemotherapy. Started on Niraparib in June 2018 and have been NED ever since. That’s 28 months and I am BRCA neg. I had a shaky start with elevated liver enzymes and high blood pressure. After a dose reduction things settled down. I have some side effects like insomnia , a bit sun sensitivity and a bit tired at times.
I think the benefits outweigh any side effects. Good luck
Kay
I started Niraparib about 2 weeks ago now. The criteria are, you have to have had two lots of chemo (the second for a recurrence) and you have to have a good response to platinum based chemo the second time (such as carboplatin). These criteria apply to all the PARPS if you are not BRACA positive (though not sure about BRACA positive ladies, they may be offered it anyway).
Unfortunately, Delia2 is absolutely correct - in the UK, though they test you for BRACA, they do not routinely test any cancer growth they remove at surgery for BRACA - its possible for your cancer to be BRACA but the rest of you not to be. If your cancer is BRACA positive, a PARP inhibitor will be very helpful. They also do not test for Homologous Recombination Deficiency (HRD) - knowing you have that would mean a PARP is likely to have a good effect at slowing cancer growth down. So as usual, I'm afraid it's a case of suck it and see - take it and see if it works.
I recently made a complaint about this lack of testing - it seems unreasonable to put us all on drugs with no clue as to how effective they are going to be when it's possible to do certain tests to ascertain their likely efficacy prior to giving the drugs. I was told its possible to be tested for HRD, but it's not something they do on the NHS. I did query whether I could get that done privately, but answer was there none.... I was also told by the consultant that they now do test cancers they remove for BRACA since PARP inhibitors are more freely available - whether that's the case in reality, or whether every hospital now does that I don't know.
I am only on 100mg of Niraparib at the moment, supposed to increase to 200mg now, but usually the start dose is 200mg, so I can't comment on side effects at that higher dose. My problem is that Niraparib often thins platelets, and I am already on blood thinners for recurrent blood clots caused by a prothrombin, a different clotting factor, so the risk of haemorrhage is obviously much greater if my platelets get low. Side effects on that low dose for me are constipation (I take extra Movicol), intermittent but relatively frequent mild to moderate nausea, some fatigue, difficulty sleeping or staying asleep (even though I feel tired), and slightly more arthritic pain, though the latter may be due to being told to stop taking my high dose CBD oil I usually take 4 times a day to help with that.
You are correct in that Olaparib is the one usually given to BRACA positive patients, with Rucaparib and Niraparib being offered to non BRACA patients. Rucaparib is much less likely to have an effect on platelets, but seems to interact with a lot of other common drugs (erythromcyin, diazepam, loratadine being three of them that mattered to me) - Niraparib has a different list of drug interactions. I suggest you check those out for yourself if you are on, or regularly need, other drugs on the Drugs.com site - its an American site and much more extensive than anything they tell you in the UK - a couple of interactions I found I mentioned to my oncologist which he didn't even know about.... There was the usual rebuttal of what I told them, but when they checked their own sources, yes, those were interactions. That site also carries more extensive information on possible side effects - I found it much more useful than the sheet of paper I was given on the drug by the hospital.
I can't say I'm thrilled at the idea of increasing my dose - I imagine its going to increase the nausea and constipation at the very least, but I'll give it a go and keep my fingers crossed it doesn't crash my platelets🙂
Miriam
Thanks for such a comprehensive reply, full of information. So far I seem to be platinum sensitive, and am on my second course of treatment, so I expect to be offered Parps afterwards.
I will ask about testing for H R D, but judging from the response you got am not very hopeful.
I hope you begin to see some positive results from Niraperib.
Jenny
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