Treatment

Hi LPC and welcome to the group.

I’m sorry to read you were unable to have the planned surgery due to a spread-this must have been so disappointing for you, expecting something and it not going ahead.

Niraparib has definitely come up before in the group from ladies who will be able to share their first hand experiences of the drug. It may be worthwhile amending the title of your post to include the drug name to see if that will get you some responses.

You can also use the search facility(the little magnifying glass at the top of the page). If you type “"Niraparib” into the search box you should be able to locate the previous posts which have mentioned it, and connect with the ladies who have been on it.

I do hope you’ll receive some helpful replies soon.

Sarah xx

 Tagging folk into this question about niraparib -> Onk RA61 Suzanne53 Willow1206 BengaliMum32 Jessie 54 Blossom1 

Hello LPC,

I am really sorry your surgery got cancelled. I have some idea how you are feeling had my surgery cancelled in similar circumstances. It must be a really difficult time for you. I did go on Niraparib for a few months last year. The side affects i had werent that bad at the start. Insomnia, constpation and tiredness. Then i started having heart palpitations, feeling funny which meant i had to go on a lower dose. Then the drugs stopped working for me completely. Everyone is different though and it works differently for everyone. i know someone else on niraparib who has just has achey legs x

Hi there - l am on Niraparib and had the same symptoms as you until they reduced the dose, Can l ask how long were you on Niraparib before it stopped working? Did you them have chemo? are you on anything similar to Niraparib now? I am wishing you the best of luck xxx

Hi Onk, I had two prescriptions so two months really. I was really disappointed despite the side affects i could go about my life "normally". I managed a 10 day walking trip, felt great but came back to crap news. Now ive found out my cancer is quite a rare cancer the normal chemo treatments wont work. Waiting to be put on a trial drug. No meds since early october. Stressed worried but trying to stay positive for my children. Taking each day at a time. Keep well lovelies x

I am so sorry to hear this. I hope you get on a trial drug soon. Well done for your positive attitude - l think it helps. I wish you lots of luck 

Hello LPC

I am currently on Niraparib and have been taking it since December 2022. I could not tolerate the high dose as it affected my platelets severely. 

I am on 100mgs per day. I take it at night which works for me. I do not suffer any symptoms during the day. I do have episodes of poor sleep but otherwise I am very well.

I am coming up to 2yrs post diagnosis and surgery. All clear at present.

Much love 

I am so pleased to hear how well you are doing on Niraparib. It is certainly working for you, which is wonderful! I hope it continues to do so. I had the same problem as you with the higher dose and l am also on 100mg daily. 
Can l ask if you have the faulty BRACA gene ? 

Hi

No I don't mind at all. I found out that I have Lynch syndrome. Which gives a higher risk of getting both ovarian and bowel cancers. 

Best x

Hi, thank you for sharing your experience. I start the Niraparib on Thursday and will be on the 200ml, I will have weekly blood tests and blood pressure for the first 4 weeks. I was told today my cancer is inactive so the Niraparlb will keep everything in check. I am hoping I will be like you and be able to get on with my life when I am on the Niraparib.