I am stage 4 ovarian cancer. 8 rounds of Carbo taxol and full debulking surgery Feb 2022.
Just wondered what the impact was of interrupting Niraparib treatment. I started Niraparib 200mg in June 2022 then increased to 300mg in September. Stopped for three weeks in November due to low blood count and needed two blood transfusions. Started again on 200mg end of November but stopped again due Covid mid December. Back on them again at the end of December only to stop again last week due to low HB. So I have only taken them for a total of about 5 weeks in a three month period.
I am wondering what impact all this stopping and starting will have on the effectiveness of Niraparib and if it will make me vulnerable to reoccurrence?
Has anyone else experienced this stop start process with Niraparib and we’re there any consequences?
I am seeing my oncologist on Monday to discuss this but the experience of this group is always so helpful and gives me ideas about what to ask my oncologist.
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Purplepansies54
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Hi, I have been on Niraparib 100 mgs. for over 2 years. I have had several breaks from this because of infections(UTI), low hemoglobin, having Covid and a recent cold. It has been an on and off again journey, but my last ct scan was NED. ( no evidence of disease) Everyone has a different experience, but I guess the breaks off hasn’t affected me with my scans. Hope you do well, Donna xx
Thanks for your reply Donna. It’s good to know you are still doing well even though you have had several breaks. It’s just so hard not to worry all the time.I hope I can restart Niraparib again next week and hopefully stay well.
Thanks Denise. I am glad that Olaparib has worked for you and yes it is reassuring to know that it has worked despite all the breaks. I hope you continue to stay well.
I have not been taking Niraparib for more than a year but have had several breaks. My oncologist says the drug persists in the body for a long time so short breaks should not reduce its effectiveness. Hope this helps.
Hi Purple Pansies, I had a very similar start and stop of niraparib in 2020 due to crashing platelets. My dose was eventually adjusted to 100 mg. I’ve been on it for 3 years come March 17th, and will be stopping it then. I’ve been NED for almost 3 years!!!! I wish you the same +. I was diagnosed HGOC stage 3C, with 7 cycles of Carbo/taxol and debulking. Best to you!
oh that’s brilliant Angela. Yes I wonder if it’s just taking a while to get the dose right although I was fine on 200mg for months. I hope you continue to be NED when you stop in March.
Hi Angela, was wondering how you have got on stopping Niraparib? After reading your post I am in the same position as you were a year ago. I have to make the decision to stop or keep going with the drug. I was diagnosed the same as you and had exactly same treatment and feeling apprehensive about coming off the drug. Would be grateful for your thoughts.
Hi Jingles. Congratulations on being where you're at now! A year later, I continue to do well. I've not had any recurrences and my CA-125 remains low. I also noticed much more energy and better sleep off niraparib. May this long continue for both of us!
I AM nervous about stopping. All the data about what happens next is just developing now. But my docs are very optimistic. Three and a half years ago, in Aug 2019 when I was diagnosed, no one used the term “cure.” In the last year, I’ve heard it used 4 x related to OC, and believe me, my ears really perk up when I hear it!!! But of course, we know it could come back at any time. . . But look at all the new research and options that have been developed in the past 3 1/2 years!
Thanks Leniko. Looks like I will be having another blood transfusion then back on Niraparib next week. One didn't seem to think there was a problem stopping and starting. More concerned about my bone marrow.
Hi purplepansiesI was on Niraparib from June 2021 to October 2022. I started at 200 mg dose but like you it caused my haemoglobin to drop and dramatically. I had 5 transfusions in seven weeks. I was eventually put on a reduced dose of 100mg and I then had eleven months of normal living. I was off the drug for six weeks from October 21 to mid December 21. I had read on this site that a lot of women found the 200mg dose caused problems. I can't tell you if coming off and on will affect the efficacy of the drug but I can say the lower dose was very tolerable. I had a second recurrence in Oct/Nov 22 so am finishing up another round of carbol/ taxol with fingers crossed for another remission.
I wish you all the best with your treatment and hope you can get the dose that suits you.
Thank you Ann. Yes, I think I might end up with a lower dose. Will see what happens in the next week or two.I know what you mean by normal living. I feel like it has just been one never ending round of hospitals, appointments, blood tests and transfusions for a long time.I would like a few months of normal living!! Your comments are appreciated Ann. I hope that your current chemo is successful and you get back into remission. Gillian X
I was on this drug for a few months, It seemed to be working (they said no visible signs of cancer--but not so. Prior to that a debunking was attempted but stated could not do it) Then my numbers started to creep up. I was then given scans. It was not working that way it should be. So I was given another chemotherapy.
Ask for scans to be given. If it is making you worst---there are so many other drugs out there.
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