Experiences of Niraparib

[Smileeveryday2021]

Hello all,

I will be having chemo 5 of 6 next week for first reoccurrence. My oncologists plan is that I start Niraparib 5-6 weeks after chemo 6. I looked at the Macmillan fact sheet on Niraparib and saw it more or less has all the same side effects as chemo listed. I wondered what your experiences of Niraparib are? Was particularly wondering about the effect on the immune system as I was looking forwards to being a bit more social when my neutrifils recover from chemo. It would appear white bloods cells take a pummelling from Niraparib too?

All thoughts and comments on Niraparib in general appreciated

Thank you for sharing your experiences

[Flute_7]

Hello Smile every day. I think Niraparib is different for everyone. It’s given I believe based on weight, so in my case I was on 200mg. I didn’t suffer from any side effects although I know from reading various posts others did. I was on Niraparib for a year before being diagnosed at the end of October 2021 with my first reoccurrence. Whilst taking Niraparib I had blood tests every month all of which showed bloods were fine however my CA125 was increasing every month, only by 1 or 2 to start with but after 5/6 months the CA125 was starting to increase in bigger steps so I had a scan which showed an increase in lymph nodes, a comparative scan 3 months later showed no change in size however a further scan 3 months later showed an increase from first scan, so Niraparib was stopped as clearly no longer working. I have just started Carbo platinum with Caelyx, no surgery as the team of surgeons, oncologist etc felt it wasn’t right for me due to location of where the cancer was. Oncologist told me Niraparib is not the wonder drug I was led to believe it was and that the average time before a reoccurrence is approx 9 months, I got 12 months.

From reading various posts on this forum there are many people who got much more than me. So stay positive and keeping everything crossed that you will be one of the lucky ones. Please let me know how you get on. Good luck xx

[Smileeveryday2021 in reply to Flute_7]

Thank you Flute; fingers crossed! I am on Carb and Caelyx at the moment…number 5 of 6 next week. I have been fairly free of side effects on that combo….other than white blood cells a bit low so two treatments have been delayed a few days. How have you found your first treatment? Ok I hope? Xx

[Flute_7 in reply to Smileeveryday2021]

Hello, great to hear side effects for carboplatin / Caelyx have been ok for you. So far for me after 1 cycle, I’ve been quite tired and a little sick initially, however the sickness tablets helped enormously in the first few days. Managing to sleep much better now although the first week wasn’t great. It’s now 2 weeks since first treatment and feeling fine, so keeping fingers crossed it will be the same for the remaining 5 treatments. Very best of luck going forward for you xxx

[Smileeveryday2021 in reply to Flute_7]

The lack of sleep that first week is the steroids…knowing that’s what it seems seems to make it more tolerable! Good you feel good at week two..two more weeks of feeling well 😁Best of luck for the next 5 and after xx

[Flute_7 in reply to Smileeveryday2021]

Thank you xx

[Cumbrianlass5]

Been on it since March with some insomnia the only side effect until the end of September. Since then my stomach/intestines have stopped working properly but nobody can say whether this is a side effect or quite unconnected. Scans show only "very minimal" progression of the cancer, and that might be because I was late being started on it. Next scan in January (a year from the end of my first line chemo) when they will decide if niriparib is working for me. My first oncologist put me on a watch-and wait plan at the end of first line chemo which felt like no plan at all, so I have been immensely grateful to have the hope that niriparib has given me. Hope you find very few side effects too x

[Smileeveryday2021 in reply to Cumbrianlass5]

I too had the watch and wait approach after first line, was discharged from oncology. Sounds as if Niraparib is doing it’s job for you…Fingers crossed for your January scan.

Stay safe xx

[Cumbrianlass5 in reply to Smileeveryday2021]

Thank you. All best wishes to you too x

[Pianoplayer731021]

Hi, I have been on Niraparib for 16 months now with just a few bumps along the way. My CA 125 has been holding steady at 14 or 15. I feel that this drug has helped to keep the cancer cells from coming back. Time will tell when I have a CT scan in January. So far, they have looked good. I was diagnosed with stage 3/4; because it spread. I feel blessed so far in this journey. Hope you do well with your treatment. Donna U.S.

[Smileeveryday2021 in reply to Pianoplayer731021]

Thank you for your reply Donna delighted to hear how well you are doing; long may it continue!You have brightened my day. Hoping I respond well too. Xx

[Pianoplayer731021 in reply to Smileeveryday2021]

Just be careful if you are taking Tylenol to sleep. My dr. told me to stop any Tylenol as it would affect my blood count on the liver. Sometimes, this niraparib can affect the blood work ( liver for instance) and that would be harmful. Maybe, if you just take it at bedtime, you will be ok. Just have to follow your blood work. Donna

[Smileeveryday2021 in reply to Pianoplayer731021]

Thank u xx

[Pianoplayer731021 in reply to Smileeveryday2021]

I hope the best for you also. Smile every day brightens my mood also! 😊

[marmay88o]

I was diagnosed with third stage ovarian five years ago and had a reoccurrence three years later. I have been taking Niraparib. It has minor side effects with me, including headaches, losing my voice in the morning and being nauseous. I have been taking saga and rushing mushroom to fight inflammation. My CA, 125 went up from 11 last year to 45 which was concerning. The CAT scan shows normal. Just hope and pray that I don’t have a reoccurrence.

[Doglover1410]

hi I was on Niraparib for 3.5 years. I started on 300 but that was too much and my bloods crashed, and I had a blood infusion. Then reduced to 200 and was fine. The only ‘issue’ i had was sun sensitivity, but nothing factor 50, a hat and some shade couldn’t deal with.

I did have a recurrence last year so had to come off it 😢

Eat well for your bowels, drink water (he told me 2.5 litres) try and walk a bit more each day and you’ll be fine

Good luck xx