I was diagnosed with High Grade Stage 4 ovarian cancer in July 2016, and have since had chemo, then surgery, and then 2nd line chemo following a recurrence. After that, in September 2019, I was offered Niraparib, which has worked wonderfully for me!
My GP has recently requested repeat blood tests, as a couple of abnormalities had shown up in previous routine blood tests. Both my serum ferritin level and mean cell volume results are outside the normal range.
During a recent telephone appointment my GP outlined possible causes of these abnormalities - none of which seemed relevant to me. It then transpired that she was unaware that I was taking Niraparib, & concluded that it was probably most likely to be the culprit.
I’m just wondering if anyone else has experienced this, and, if so, was the Niraparib withdrawn?
Wishing you all a very Happy New Year!
Written by
Flora3
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Hi Flora3, looks like you have been on Niraparib for a long time. My Dr. stopped my niraparib after three years. I had many UTIs and low blood counts. I am going to a hematologist that my Dr. recommended to me. My Ferratin level was only at 9, which is being severely anemic. I had a four hour iron infusion which boosted my count much higher. I was short of breath and I feel so much better after getting the iron. Niraparib is great for holding cancer back, but the blood can take a hit. Three years is maximum I believe to be on that drug. I almost think that two years is long enough when there are side effects. Hopefully you are talking to your cancer specialist about your ferratin level. Sending my best wishes, Donna xx
I’m sorry to hear that you could no longer tolerate Niraparib, but glad that you’re feeling much better now.
I was told that, because I’m stage 4, I could stay on Niraparib indefinitely, until it no longer works, or the side effects are problematic. Apart from the first few months, when I needed regular blood transfusions, I’ve been fine (my dosage was reduced to 200g). I shall just have to see what the oncologist says at my appointment the week after next.
Hi Joy, I had a few blood transfusions also. I also had so many urinary tract infections from being on this drug. Everyone responds differently to niraparib. Happy to see that you are doing well. My dose was also reduced to 100 mgs. Hopefully you will have a good report when you see your oncologist. By the way, I was also staged at 4 , because it spread beyond my intestines to my abdominal wall. So far I am NED, so that is encouraging since my diagnosis in Oct. of 2019. I am 77 , so no spring chicken for sure. Hang in there Joy, best wishes Donna xx
Glad to see you’re doing so well, Donna. I notice you’re in America, whilst I’m in England - guess the protocol for continuation is different. My very best wishes for your continuing NED status! Joy
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