Hi lovely ladies, I hope you are all as you can be. I was just wondering if any of you ladies out there are on niraparib for maintenance as I am to start this regime on 21st September and I am feeling a little apprehensive although I don't know why as I have been on this journey for nearly 6 years now! How did you find the side effects and is it easier than chemotherapy, I know we are all different but would like your input. Whilst I am here I wondered if any of you could shed some light on this, for 3 weeks I have had really painful shoulder pain radiating down to elbow, I have full movement and it is really painful at night. I saw the Gp and she was baffled said it was probably the chemo, yet when I saw oncologist she said it wasn't! Has anyone else had this? Pam x
Niraparib: Hi lovely ladies, I hope you are all... - My Ovacome
Niraparib
Hi Pam, sorry I can't give you any input just yet. Like you I'm about to start niraparib nextweek for 1st recurrence. I'm brca negative but platinum sensitive. Praying that we will not have any drastic effect and niraparib will work on us. Take care.xx
Luchie
Hi Luchie, I too am brca negative but platinum sensitive but this will be for 3rd recurrence so fingers crossed for both of us. Keep in touch and let me know how you get on, take care. Pam x
Hi Pam, I have been on it since Nov last year and first reoccurence. Brac neg and platinum sensitive. Started on 3 capsules but felt very nauseous so reduced to 2. Have felt fine ever since,don't sleep well but don't think that's down to Nirararib. Had made my skin very tingly when in sunlight and got quite burnt in Feb when didn't have suntan cream on!. My Ca125 is moving very slowly up😢, next monthly blood test results on Tues 😕 so maybe the beast rearing its b....y head again but been chemo free since Oct 2017 so suppose I should be pleased. The nurses always ask if I have any mouth issues but not a side effect i have suffered with. Hope it goes well for you. All the best Cathyx
Hi Cathy 14, Thank you for replying, it sounds as if you when they reduced the dosage that it wasn't too bad. Hopefully ca 125 is rising for another reason as apparently it can I will keep my fingers crossed for you. I to am in Devon treated in Exeter. Take care Pam xx
Hello Pam, I have only been on niraparib for six weeks so early days to know how it’s working. Re side effects I have been very breathless when walking. Always suffered a bit after chemo but it seems worse now, definitely need sun cream, I didn’t have a hat on whilst in the pool and my became extremely itchy. My last but not least is constipation, my oncologist was well aware of this and gave me plenty of tablets to combat it,
So far I am coping very well.
Good luck and best wishes.
Hi Lewisriley47
I’m due to start Niraparib tomorrow and I’m also concerned about side effects. Plus also the doseage I’ll be given. I’m hoping I get started on one or two, as I think your weight should be taken into consideration. Will let you know how it goes. Good luck xx
Hi Supergran, Good luck for tomorrow, and yes we will keep in touch and compare notes! Pam xx
Hi
I expecting to hear whether I can have this when I see onc on Wednesday. I have had a scan and blood tests tomorrow. I have been on carbo/taxol for second recurrence and was feeling it wasn't working as well as two previous occasions. I understand the scan has to be clear and CA125 below 35 so a little concerned I won't meet the criteria. I am BRACA 1and 2 negative. Good luck to you.
Maureen xx
Hi Maureen, Thank you and I hope you get good results on Wednesday Take care. Pam x
Hi Pam, I'm in the UK & was the first person to join the PRIMA trial which was rolled out at The Royal Cornwall Hospital. 66% would get Niraparib, while 33% were given a placebo. I clearly got the drug as I had kidney problems due to too high a dose (3 capsules). This was last summer. Once my dose was reduced I tolerated it really well, but I had to drink extra water, so would advise anyone on it to keep really hydrated. The PRIMA trial doesn't start anyone under 75kg on 3 capsules now. Very few side effects really, but the inevitable drop in blood results, because of low haemoglobin I ended up on one. That dose wasn't strong enough for me sadly, & I have had to come off it due to a first recurrence. I'm currently on a 6 month course of Carbo / Caelyx, half way through it & due a CT Scan next week. I believe in the benefit of Niraparib, wish I could have stayed on two?! Good luck, & watch bowel blockage, I had a minor bowel perforation & experienced shoulder pain (referred) before it happened. Eat foods that are low in fibre, the complete opposite to constipation if you find you aren't going regularly. Skins /peel / seeds & wholemeal products cause blockages, where the bowel has developed adhesions causing narrowing. Best wishes Pauline x
Thank you for replying, it would seem that the 300 dose is not tolerated by too many ladies but I won't know until 21st September what I will be having I have noted your comments regarding hydration and diet for which I thank you. I wish you well on the carbo/caelyx I had this combo last year and found it one of the easiest to tolerate I even managed a week in Portugal mid chemo. Take care Pam x
From my experience, [had total shoulder replacement] sounds like rotator cuff pain to me. See orthopedic, maybe a shot will help. Many blessings, Eileen
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