Niraparib

[Samjane]

Results from end of chemo were positive! No trace of cells in pelvic area and stomach has just minimal residual cells left. So last night I started on Niraparib 200mg. Oncologist or gorgeous George as I call him 😉 and the nurse seem positive so let’s see how things go. A few have mention lately about being told their cancer is incurable and they are scared. Well I was told from the outset it was incurable and treatment is palliative, which freaked me out. Not any more. Palliative only means managing the disease and side effects, not end of life care which is totally different. Incurable means there is no treatment which cures ovarian cancer. YET. Things are progressing well in research and there are more options available. So hope you all have a wonderful Christmas, try to push this crap disease to the back of our minds and enjoy time with our loved ones. Any feedback regarding Niraparib greatly received. Much love to all 😘xxxxx

[Katmal-UK]

Good luck on Niraparib. I was told at the outset my OC was incurable and that was over 11 years ago, currently on Olaparib on a trial (last 5 years). Hope it goes as well for you xx

[Samjane in reply to Katmal-UK]

Thank you, you are amazing and always think of your long time remission when I’m having a bad day. Xx

[LittleSan in reply to Samjane]

Me too! 😀

[Davonian in reply to LittleSan]

And me! ❤👍

[Roobarb1 in reply to Samjane]

Me too 😀 ❤️

[Maxjor in reply to Roobarb1]

Me too!

[Juleswhee]

Hi Samjane , I too took my first niraparib last night ( 200mg for me ) after mixed end of treatment results so will be reading your replies with interest .Feel OK this morning , hope you do too.My Onc has always said incurable OC is treated like any other chronic disease so I have never freaked out . Big question just because it’s Christmas , Can I have a glass or two of Prosecco on Christmas Day or is it not advised ?.A very Merry Christmas to you , I hope Niraparib brings us both good results xxJulia

[Samjane in reply to Juleswhee]

Yeh have a glass on Christmas Day, I am! I know they advise not to drink much or at all but little bit of what we fancy doesn’t harm us. Yes fingers crossed we get good positive outcomes xx

[Mptelesca in reply to Juleswhee]

Hi, Juleswhee!

I had prosecco both on Christmas Eve and Christmas day. At first, on 200mg of Zejula, just the smell of wine made me gag. Now I'm on 100mg (because of platelets) and I can actually enjoy a glass of wine minus the gag factor.

Cheers!

Marisa

[Lizz49]

Hi Sam,

I love this message!! 💕 And I’m so glad to hear you are doing well and now on a parp with things looking wonderfully positive for you!! I’m stage 3 clear cell and in remission after frontline treatment, but my onc has never said to me that it will return or it can’t be cured. Although I know the chance of recurrence is high they have also said it might never come back and no one knows

what will happen, so I’m trying to live in the moment and enjoy each day!

As you say things are progressing well with more treatment options available so we have to have hope and stay positive! 🙌You sound like you’re doing an amazing job at that and I’m sure you’ll have a wonderful Christmas with your loved ones, I hope you enjoy every minute! 🎄🥂💖☺️ You really deserve it!!

Liz Xx

Ps I like the sound of gorgeous George!

[Alifit]

Morning!

I’ve just finished 6 months of second line Carbo/caelyx and I’m having my end of chemo scan today - seeing the consultant in January. I’ve been told that I may be able to have Niraparib, but it depends on how much my CA125 has gone down - I believe it has to be a more than 90% reduction from the start of the most recent treatment - I’ll know in January.

I was always told that I was incurable, which initially sounds alarming, but when you consider how many other illnesses fall into that category - angina, diabetes, diverticular disease, they are all managed with drugs and careful monitoring.

As you say, SamJane, the progress on new drugs and the extraordinary research that is happening now is amazing, thanks in particular to the charities who used their funds to enable this.

I hope everyone has a very Happy Christmas and New Year.

Love to you all, Ali x

[Juleswhee in reply to Alifit]

I am confused , I was given naparib yesterday but my ca125 is higher now than when recurrence started but my scan showed considerable shrinkage so stable disease .I asked consultant about this and she said it has to show significant reduction for one of the criteria ie ca125 or scan , she also said we don’t treat the results of the blood test just the symptoms .That told me .Wishing you a Merry Christmas .Julia xx

[Alifit in reply to Juleswhee]

It is confusing because I was told that imaging trumps CA125, but I’m also being told that I have to have the CA125 reduction to access Niraparib.

Not worrying about it today - I’ve got Christmas shopping to finish!!

Best wishes, Ali x

[Juleswhee in reply to Alifit]

Yes , it’s unfortunate that we had our consultants this week isn’t it , hope you get your shopping finishedxx

[Samjane in reply to Alifit]

My ca125 was 110 at start of treatment and is now 13. But my onc said it also depends to how things are after scan. Has to be partial or good/full response. Xx

[Joanie12]

Fantastic news, long may it continue, enjoy Christmas and 2019 here you come!! Good luck xx

[Caroles1]

Well done, amazing news, as you say, lots of things are incurable, that just means they can’t make it go away for sure.

But if it’s being managed, we can go on with life and that’s all anyone does.

Happy Christmas to you and keep on going on

Carole xx

[Hidden]

I love your attitude and I wish you the very best of luck, I am also managed by my Oncologist but we are doing okay. If things shift my next step is carbo then a parp

[kat98116]

Wonderful news! When I first was given an appointment with the palliative care doc I freaked out! I, too, thought it was for "terminals" to keep them comfortable. Well, this wonderful doc helped me manage some awful symptoms during frontline treatment, and he also had a wonderful listening ear. His fav saying was "grab a little joy each and every day." I was so grateful for the support.

[Maus123]

Oh that's awesome, Sam. Good luck with the parps! Xx. Maus

[Harrygirl]

Great news and great outlook!

Wishing you all the best with the parps and enjoy the holiday season with your loved ones!🎄✨🎉

Christine xx

[SuSue]

Hi there I have been taking niraparib for almost 4 weeks and if there was one tip I could give you it would be to drink at least 2 litres of water a day. The reason being it can be quite harsh on your kidneys and I got really dehydrated. I had headaches quite a lot at first but it's only the odd one now and sleep disturbance. All in all not finding it as harsh as iv chemo so fingers crossed. Good luck xx

[mariootsi]

Have a beautiful holiday! Celebrate!

[Mptelesca]

Congratulations, Samjane! Glad you had great results. I do appreciated how you explained what oncologist said to you. It's so good to hear some positive stuff which gives us hope.

I agree with you...they haven't found a cure...yet. I get so upset when I read stats such as 70% of women OC will recurr within the first 3 yrs and then blah, blah, blah. Just crazy statistics. We are the forerunners on these Parp Inhibitors and I can't help but think we are on the road to a cure. Enjoy your holidays and thank you again for sharing such great news!

XOX

Marisa