Hi has anyone with stage 1A clear cell aggressive cancer been taking the above drug? I am trying to find out the pros and cons before I say yes/ no to the oncologist. I have had 2 sessions of chemo 6 treatments each. Is the drug likely to give me more years?
Dahlia 2270
Hi Anne109
thank you for your response.
how have you been feeling with the Niraparib. Any side effects? I have opted to take it but am still unsure of my decision due to any possible future chemotherapy not working as well. It seems it may buy me a few more months.
Dahlia22
Dahlia 2270
Hi Dahlia, unpleasant side effects of nausea, constipation and fatigue plus very raised blood pressure. I’m taking 200mg at night, what about you? I’m very uncertain whether I want to continue NIRAPARIB, not sure the extra few months is worth feeling this miserable. Can I ask what made you decide to keep taking it? Also no one has told me that future chemo may be less effective because of NIRAPARIB and I haven’t seen it in the literature, who was it that told you? Best wishes.
Hi Anne 109
i don’t know how long you have Been on the drug. I am due to start on 28 April. I have opted for the drug as my cancer appeared again after being given the all clear so have had 2 times 6 treatments of chemo. I have just completed the 2nd. I have a clear cell aggressive cancer which cropped up again after about 12 months so it is likely to appear again in the future. I do not have the cancer gene so the Niraparib may not be as effective. I want to live as long as I can with some quality of life which is why I chose to try the drug. Not looking forward to it but I will just get on with it like I have with all the treatments so far.
The Oncologist at St James’s and also the Oncology nurse has confirmed that as time has gone on with the use of these drugs that it has emerged that chemo may not be as effective.
ask your oncologist about this. He should have access to all research and facts.
hope this helps. Perhaps the symptoms you describe May settle down in a while. The Oncology nurse said they would.
take care
Dahlia 2270
Dahlia 2270
Thanks for helpful reply Dahlia, I really admire your attitude.
Most people seem to get on with NIRAPARIB so please don’t worry about it based on what I’m experiencing. I’ve only been taking it for seven weeks but I’ve been consistently unwell throughout. The first two weeks were particularly grim for me but fingers crossed you will be fine. One of the side effects I’m experiencing is raised blood pressure so I started Amlodopine and was so, so sick I discontinued after a week. I’m currently waiting for a call back from oncology nurse to discuss reducing the dose or discontinuing NIRAPARIB. I’ll also ask her about reduced chemo effectiveness.
Good luck when you start it and I really hope it will keep any recurrences at bay. Let me know how you get on. Best wishes.
Hi Ann109
thanks for your response.
I am already on blood pressure medication. Perhaps the one you are on could be changed. There are lots of different drugs associated with this. The first one I was put onto did not suit me so I asked to be changed and have been on Indapamide and been fine ever since. There are also different dosages in the different blood pressure drugs so may be there could be a lower dose in yours.
you may feel better with the Niraparib if you could get the blood pressure medication sorted.
Good luck.
best wishes Dahlia2270
Dahlia 2270
Thanks Dahlia. Onwards and upwards eh? Best of luck to you too.
Hello Dahlia and Anne109
I have Stage 4 ovarian cancer and started Niraparib back in June 2022 after chemo and surgery. I was slightly over the 77kg weight then and started on 300mg. My bloods responded and my platelets fell so this was reduced after about 2 weeks. Since then I have been on Niraparib 200mg. I take these at night as initially bit queasy but this went after a month or so. I do have occasional constipation but just take the occasional Dulcolax and this sorts this out. I have had some aching of joints but doesn't stop me doing anything. I am currently stable and bloods'normal'. For me its worth it but did meet one other patient whilst having bloods taken whose sleep and mood was badly affected and ended up taking multiple pharmacy to remedy the effects. Its an individual choice but the research results are showing real advantages so for me 'go with the science' unless of course the side effects affect your quality of life to an extent that you have to balance this with the potential extension to life.
Happy to chat if helpful
Really great to read how well you’re tolerating NIRAPARIB Pugster, thanks for sharing. Unfortunately it seems I’m going to fall into the group that don’t tolerate it well as I’m feeling so much better since I came off it. My blood pressure is beginning to come back down and constipation virtually resolved but the greatest difference is not feeling sick all day every day! I have an appointment with consultant in a couple of weeks and will discuss whether research indicates any benefit from taking 100mg - if so then of course I’ll give it a go.
Best wishes.
Hi Pugster
Thanks for the info. I start taking Niraparib 200 mg tonight following my second course of chemo. This was due to cancer cells being identified a second time at the top of the omentum area. Currently NED at a recent scan. I have a Clear cell aggressive cancer which is difficult to detect..I have not been sleeping well as my brain has been trying to work out best course of action. To take the drug or not.
hope I don’t have much of a reaction. I never felt sick with any of the treatments used in the 2 chemo sessions. Fingers crossed
Dahlia2270
Dahlia 2270
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