After my blood transfusion of 1 unit I felt really good, last week my Haemoglobin was up at 92. They dropped the dose of Niraparib down to 2 x 100mg, sadly a week later my Haemoglobin is down to 84, they want to see me next week and if it has dropped anymore, will arrange another transfusion and drop the dose to 1 x 100mg.
My question is if I can't tolerate Niraparib, then what? back to watch and wait? more chemo or another Parp? My CA125 is 207.
Hi Lynn. Can you get on Olaparib? Maybe in a trial? My dr and research I read says Olaparib is less rough on bone marrow. I think it’s your best bet. Xoxo
I am BRCA neg, I was offered it as a trial but didn't qualify as your Haemoglobin has to be over 100 and mine was only 77. x
Hi Lynn
Glad you initially felt well afterwards.
I am also brca neg. Recently taken off the Icon 9 trial as l needed 2 blood transfusions in 7 weeks. Olaparib deemed to be doing more harm than good as ca125 going up month on month. Recently had ct scan and go see the consultant next week for results.
My consultant is not apposed to trying another Parp but only after some chemo to get things under control.
My issue is that we have so little material left for trials people to test , l need another biopsy doing or l will never qualify for anything again! So have been watching and waiting. Keen to see what they say next week as I begin to feel symptoms arriving.
I got 2 units each time, perhaps they need to give you more. Have you looked at Rucaparib?Good luck.
Sylvia x
I was put forward for the ICON9 but I didn't qualify in the end due to low bloods. My Oncologist is seeing me Monday, I will get another unit if my Haemoglobin has continued to fall. Good luck with your CT scan results. x
Have you asked about a break from it? I had to have 4 weeks off after my transfusion and then went back on it at a lower dose. I talked them into 3 weeks but my bloods were going up very slowly. If I remember correctly you went straight on to the lower dose? x
My bloods were low before I started I only just scraped through with my numbers, yet they started me on 300mg despite my asking to start at a lower dose. I asked for a break before I started as had only come off of carbo/caelyx 7 weeks earlier and I had read that you could start Niraparib with 12. I think a transfusion before I started and a few more weeks break might of done the trick., but they don't listen my hospital don't anyway! I suspect I am heading for a transfusion and a 1 week break which is the standard practise and then onto 100mg. I read recently that an "individual treatment plan" is to be introduced soon, whereby the patient has some input into what they want, can't come soon enough for me, I know they are the experts but the patient knows her own body and how she feels. Sorry for the long reply and rant I had a particularly bad night!!
Hey no need to apologise, my Consultant, who is also a top man in Cancer Research , was adamant that I had to have a break, it even says it in the booklet I got at the start. Did you get that? If not I can try and post you a photo of it? I hope they start listening to you xx
Hi Lyn--my son is very involved in my journey and when my oncologist told me most PARPs are the same so I could choose, he did all this research and said that Olaparib and Rubraca (can't remember the generic name) have less side effects than Niraparib so we chose Olaparib. Blood numbers went lower but never to the point of needing a transfusion and I was on full dose (with Niraparib they are supposed to give you dosage based on weight --under 170lbs, 200 mg maximum). That is not true of the other two. So maybe you can ask to switch to see if it will make a difference... I don't think you have any thing to lose asking since you are struggling so much with Niraparib. oxoxoxo Judy
I was never on that but did blood transfusions and gave me potassium. Sometimes chemo is too strong they either lower dose, wait longer between or change meds. Try to eat well sometimes red meat green veggies helps so you don't skip. Best wishes Liz
Hi Liz - the doctor told me I am not iron deficient- my haemoglobin is low only, he said more iron won’t help, I find it difficult to understand 😢
Agree with you - here’s to the individual treatment plan which I feel can’t come soon enough.
I hope you don’t feel set adrift at the idea of not receiving a parp in the short term. More isn’t always better and a break might be what’s needed. All best wishes x
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