Niraparb trial

[Michellemasson29]

Hi I’m trying to reach out if anyone else is in my situation I started the niraparb trial in January? I started on 300mg which quickly made me very ill? After being admitted to hospital went down to 200mg 6 weeks ago. Was fine for two weeks then had a 4 week break from blood tests in that time I got really breathless, palse rate was through the roof so had a blood test and most of my red blood cells had depleted? So just had 5 units of blood over last two weeks. My oncologist said to reach out to see if other ladies maybe have had to go on 100mg and how are you feeling? Thank you.

[chrissapam]

sorry to tell you this but I had to come off it altogether....went to 100mgs but still felt really ill....turned out to be my red blood cells....had lots of blood transfusions subsequently...my onc was worried about me driving to London so I continued my treatment on the south coast. Blood has got better but never recovered totally. Hope this helps both yourself and your oncologist (My treatment started at the Marsden and I was one of the first in the UK )

[Michellemasson29 in reply to chrissapam]

Thank you so much for your reply it has helpt a lot. I have never felt so ill as I have since being on this trial? I thought it was going to be the answer to my prayers?

I have just had 5 units of blood in the last two weeks? I saw my oncologist Monday and has given me a 3 week break to see what I would like to do? Your answer has helpt a lot thank you

[chrissapam in reply to Michellemasson29]

sounds good I never felt so ill either and I was on a cruise with my two 14 year olds and no other adults when it got to its worst....I kept thinking how I could avoid being flown home! When we eventually docked and I got in my husband's car I was in tears of relief to have made it.

The oncologist I now see locally has only had two people on it but they both have had to stop apparently. I don't like to be too negative on this site as some people do seem to do well but I suspect like so many things it depends on your genetic make up. Do not be too down hearted...there are other things out there. I've lost count of the number of blood transfusions I've had....has gone down but the last one was only this week...take care Chris xxx

[Michellemasson29 in reply to chrissapam]

Wow thank you, yes I was in turkey three weeks ago I really didn’t want to go as felt so breathless and migraines, everyone was saying it will do you good.i have never been so happy to get home. Went for blood test the Nxt day and the ward phoned and said how are you feeling I explained and they come straight in now we dnt know how you are still standing? Been off it two weeks but still dnt feel right? You’ve really helpt thank you

[RonLitBer]

onclive.com/peer-exchange/o...

[Michellemasson29 in reply to RonLitBer]

Thank you really interesting

[Hopefulgal1]

Hi I also follow an ovarian support website that is primarily with American users and also some Canadian as it has a v wide readership / contributors and I’ve read a lot about niraparib on there: it’s called “inspire” and it’s been hugely helpful as there is so much else going on in the states and I’m sure you will find lots of info and help there. Sadly I’ve just finished my carbo / Caelyx chemo and have been deemed platinum refractory so I would now not be eligible for applying for a trial here. So sad as it’s having some great results even for us BRACA neg women...

Good luck with those red cells! X

[Hidden]

I’ve been on it since September. I understand that blood issues tend to settle down. That’s certainly been my experience. I had one pause due to platelets and dose reduced to 200mg. Then a second pause due to Hgb with 3 units blood. Still on 200 and bloods generally holding up. I’ve recently been investigated for racing heart (I was unaware of it). My onc doesn't think it’s to do with the dug, but I guess this may change if the tests show nothing. she’s not keen on dropping to 100 - wonders about effectiveness. But in the US they seem to do it. Also reported that the women on it in the clinics were reporting few side effects. Certainly I feel very well with it. It’s all very individual. X

[Michellemasson29 in reply to Hidden]

Thank you so much for your feedback. Like you I have had a racing heart and pulse rate has been between 120-140 at its worst was hospitalised with it as well?

While I’ve had this two week break my hearts fine and pulse rate is 90 at the moment?

So will gather all my information as my oncologist said reach out to others on the trial and see. Thanks so much and yes your right every body’s metabolism is different

[Michellemasson29 in reply to Hidden]

Hi just wondering how your doing on the niraparib? I’m now on 100 mg and having weekly blood tests because of the 200mg depleting red blood cells. After blood transfusions feel loads better? Hoping all stays good. I hope your doing ok and will keep in touch if ok

[Hidden in reply to Michellemasson29]

Good to hear you’re feeling better. I’m still feeling fine. The heart stuff was investigated and nothing alarming was found. My thyroid tests have made me wonder whether the cause may lie there. If not, then I will be going back to the onc with what has been ruled out. My CA 125’s been going up and I’m due a scan to see what’s going on. (Heart sinks!) some women in the US have had clear scans with rising CA125, so I hope I’m like them.

[Michellemasson29 in reply to Hidden]

I really hope so for you , I’ve just been sent a piece in are local Portsmouth evening news. About one of the First Ladies to start our trial? Looks really promising. It’s in today’s you can look on internet?

Good luck with scan thanks for getting back to me.

[Elizabethe]

Hi michelle. Like mac 27 I've been on it since September. Also had issues with blood counts, had blood transfusions, came off it for a bit. Now on 200 mg. side effects similar to chemo - so fatigue and nausea - and no appetite - and also have a racing heart sometimes.

I've been told I could possibly have treatment breaks, or go down to 100 mg because i feel so unwell. And I'm really tempted, but also haven't done, because at the moment it's working really really well, not only controlling the tumours but reducing them. So for the time being I'm sticking with it.

Are you in the PARP inhibitors drugs and trials Facebook group? It's a closed group but you can request to join. There are a few US and UK women on there who are or have been on niraparib, I think there might be someone who has gone down to 100mg.

Please let us know how you get on, there are still so few of us who are or have been on this drug it's really helpful to share experiences even though we are all so different in the way we react or tolerate it.

Elizabethe x

[Michellemasson29 in reply to Elizabethe]

Thank you so much I will look into the group thank you.

Yes I am now feeling really well been if for two weeks? Racing heart has gone and like you said it’s a bit like being on chemo feeling? I feel that after speaking with my oncologist a third of her patients have gone to 100mg so will give it a go. She said you can have breaks of up to 4 weeks as it stays in system for a while too?

Thank you again for your information and all the best