Hello, ladies. I finished my front line chemo about three weeks ago. I have bloodwork on Monday, CT scans on Tuesday, then meet with my doctor to discuss test results and Niraparib on Wednesday. After much research, I have pretty much decided not to start with 300 mg. I think 200 mg is as high a dose as I will try. But I will see what my oncologist thinks. My oncologist said I could visit my sister (in hospital and nine-hour drive away), but I had to return two weeks later to start the parp inhibitor. I guess I was hoping for a longer break between finishing chemo and starting a new heavy duty medication. Can some of you clue me in on how soon after chemo before you started Niraparib? Thank you and
Best wishes from Louisiana
Sashay
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Hi I was only about 3-4 weeks too, there is a window of time to start (sorry I can’t remember what it is)
I started on 200 and, with no side effects, was put up to 300. My bloods crashed and I had an infusion and then after a little break went back on 200. Not tempting fate, but my CA125 is stable and I feel great on it. I hope you feel as good as I do on it, good luck x
I’m glad you are doing well on 200 mg. Thank you for sharing your experience. BTW, my daughter and her dog, Wookie, are staying with me and the three of us will make the drive to visit my sister. We are dog lovers, too. 🐶Sashay
What a great name for a dog! I hope you have a great time and the drugs are easy on you! Really I can sometimes forget about it all! Happy to help if you want to message me x
Once you have all your test results and are at your clinic, ask if you can have a longer break. If you can't they will explain why. I was told I had to start Niraparib within 8 weeks of previous treatment. Good Luck
Hi, I was on 200 mgs., but I had to stop because my blood counts were down. I had a blood transfusion. They stopped me on that dose for a while to build my blood up. Now, I am trying 100 mgs. to see what that will do. I have my blood checked weekly for 6 weeks and now again for a weekly month. I think I started Zejula about 8 weeks after my last chemo. I believe they don’t want you to wait past 8 weeks. Hope you do ok. I have insomnia and some constipation, so you have to adjust for that. Hope all goes well. Donna 🥰
Donna, thank you for sharing your experience. Halfway through chemo, I had trouble with anemia and low platelets. I had to have three Udenyca (Neulasta) shots during the second half of my chemo. My bloods have still not bounced all the way back. So I am concerned about that. Also, I have high blood pressure and issues with rapid heartbeat. I read that Zejula can raise blood pressure and cause irregular rapid heartbeats. I feel as though, I already have two strikes against me, but It is what it is. I hope my cardiologist will be able to address these issues if I run into trouble. Thanks again for responding, Donna 🙏🏽Sashay
I will be praying that the doctors can find a plan to work with you. Sorry about your bp and rapid heartbeat. This chemo medicine is so powerful, that it’s to bad that it just can’t target the cancer and leave our cells and organs alone. Be praying for you. Keep the faith, that’s the only thing that gets me through all of this. 🌺 Donna
I’ve been on Niraparib for 4 months and started on 300mg which is the recommended dose by the pharmaceutical company. However in my area (Norfolk, UK) I am the only one on this dose, most people are given 200mg, however I insisted on the proper dose hoping this would give me a better chance. Like you will all know the side effects look pretty bad. However I’m really pleased as I feel great most of the most. My blood pressure has gone from normal to slightly high so I’ve been given meds for that & my sugar level has increased by a couple of points, but it could be far worse. My oncologist is pleased that I am tolerating the drug really well. At this point I have no idea if the drug is actually working though. I’ve recently had a CT scan & I see the oncologist on Tuesday. I have to say I’m really worried about that as I always expect the worse at those appointments. Good luck X
Thank you for taking the time to share your experience, Lonsdale. I negotiated (haha) with my oncologist for a 200 milligram starting dose. He nixed my request to be given just 100 mg. Since that visit, I have researched and thought further about the risk/benefit. I asked my doctor how much time in remission might a woman similarly situated have without Niraparib. He said 18 months. Were I BRACA positive (these ladies can expect an additional 21 months in remission), I would not hesitate. But I am BRACA negative and can only expect 4-6 months extra in remission. Right now, I am leaning towards freedom from toxicity for a while. I have a PET scan in several days to see if an inconclusive spot on my liver is cancer and also to confirm whether nodules in my lung are cancer. The last two radiologists think they are inflammatory related, but my oncologist wants to be sure and I have refused a needle biopsy. What a tough decision! So grateful for the input I have received here. 🙂
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