Hello all, hope you are doing well

[Jacquiemoo]

I had my last chemo on may 4th, scan on the 8th and confirmation that my cancer is gone on the 10th by my Dr. She has chosen not to put me on naparibib at this time due to the side affects. She had a patient develop leukemia after take it and doesn't want me to develop it. Has anyone had side affects this extreme?

[Lyndy]

Well done Jacquiemoo, well done on your results! That’s epic!

It is known that Parpis can lead to AML but only rarely, so you are warned about it before starting.

Your oncologist feels that you don’t need to take it so I would take that xx

[Jacquiemoo in reply to Lyndy]

Thank you. I will! Have blood test in August but was told could come back in 5 months, so hoping all is good on ca-125. Take care, stay strong and think positive. That's what got me through this I believe..

[Newbery3]

Congratulations 👏 🎊 great news x

[Mommoo65]

Great news!!! Relax and enjoy your summer!!

[delia2]

That’s great about being ned! If I were you I might get a second opinion on the Niraparib. There’s a small risk of mds or leukemia. I take it you are BRCA negative . Are you HRD negative as well? She may feel you wouldn’t benefit enough from Niraparib. But it’s worth looking into the data more.

[Jacquiemoo in reply to delia2]

thank you for contacting me. I was brac 1 &2 negative. And also HRD negative. I am thinking she is pretty sure it won’t come back but I’m nervous about it. I will look into it more..thank you again..

[Betti99]

I have been on a Naparibib for 2 1/2 years and have had few side effects. Congrats on your completion of Chemo and having a clear scan.

[Kaitlinsmum]

Hello,I have not heard of such a severe side effect but some ladies on here have reported changes in their blood platelets.

I just had trouble with my bowels but this was sorted with meds. Then I developed an intolerance to gluten but it was manageable. Still glad I took Niraparib for over 2 years.

Good luck x

[Pianoplayer731021]

Hi, I have been on Niraparib since July of 2020. I am BRCA negative and I am still NED. I believe the dr. wants to stop this med in July, which would be three years. Yes, I have had to take breaks from this because of many UTIS, low hemoglobin and low red cell count. There are a few things in the high category also. I had two blood transfusions because of low hemoglobin. I will be happy when I can stop this med, however it has kept me NED for 3 years. I don’t know if I could have been NED without it, but that is something that I will never know. Sending my best wishes that you will stay NED for a very long time. Donna 😊

[Jacquiemoo in reply to Pianoplayer731021]

that sounds great, pray you stay NED! I’ll ask again to see but I was also HRD negative. Maybe I still could. Will ask. Thank you!

[Pianoplayer731021 in reply to Jacquiemoo]

I am not sure about my HRD status, but I will ask about it. Thanks

[Greenme]

Yay! Congratulations on finishing chemo, and having a clean scan! Naparibib is a parp inhibitor. They do have a lot of side effects, and also seem to work better for women who are BRCA positive. I am a nurse, and was on bevacizumab (Avastin) for a year of maintenance treatment after chemo. It was a quick (30 minute) IV immunotherapy treatment every 3 weeks. So, there are alternatives out there.

I understand your concerns about not wanting to just end all treatment at this point. It sounds like you should have another discussion with your oncologist. Besides the side effect concerns, there are probably other reasons going into the decision-making process that may be helpful to know. You can certainly ask about alternative treatments as well. BTW, I just past my 5 year point as a survivor (stage 4), with no recurrences. So, Avastin worked well for me!

[Jacquiemoo in reply to Greenme]

oh that is fantastic! So happy for you! I’m going to look into alternatives and will ask her. I do not want a recurrence for sure. Thank you for the information!

[Rosado22]

Excellent news - now make the most of it doing all the things you’ve ever wanted to do! Maybe it is the stage of your oc as well as BRCA negative and hrd negative. I was told about the leukaemia risk but he implied it would be much further down the line, ie taking it for long time. I’ve had platelets and red blood transfusion and issues with getting blood pressure med sorted out properly - hopefully sorted now though. Enjoy the moment!

[Jacquiemoo in reply to Rosado22]

Thank you for the info. I'm not sure on anything at this time but checking into it. I hope you continue to be healthy and it helps you to be NED. Praying we all will. Please take care. Thank you again