Has anyone been on Niraparib twice?

[Seedlings]

I have just finished my third line of chemo and CT was very good. CA125 is 8. My consultant has said I can go back on Niraparib as maintenance if I want to. I was on Niraparib for fifteen months between first and second recurrence. I’d like to know if anyone else has been given the same PARP twice ? If so , how did you find it and did you get a good remission length? The alternative is Avastin infusions at a reduced dose. I was on Avastin after first line chemo but found the side effects very difficult . The third choice is to monitor closely with regular bloods and CT if necessary. I really don’t know what to do. I’ll be guided by my consultant but just though some of you wonderful warriors may have some info that might help me decide.

[Lyndy2]

This is interesting…in UK (I take it you are in the Republic?) the Nice guidelines preclude a further period on Parps if you have already failed on one. But if chemo works more than once, perhaps a Parp would too?

Let us know how you get on xx

[Seedlings in reply to Lyndy2]

Tks LyndyI thought I couldn't go on Parps twice either. I will let you know how I get on.

Ann

[delia2]

Hi. Good news about your results! I don’t understand why he would put you back on Niraparib if you had a recurrence on it? Doesn’t that mean you became resistant to it? Also I am in the US and there’s been a big change in protocols for using PARPs in later lines of treatment. I’m not good at pasting in links but if you google Survivor Net and search for latest updates on PARPs you should find it. Or just google latest updates on PARPs in US. The reason for the change is that in later lines patients on PARPs died sooner than controls. You might look into Elahere. You have to be tested to see if you’re eligible. Xx

[Seedlings in reply to delia2]

Thanks Delia.I'll look into those links for further information. Information is vital really in making these decisions. I hope you are feeling well. I'll let you know how I get on.

Ann

[Doglover1410]

I had a recurrence on Niraparib and was told I couldn’t go back on it 😢

Be interested to see if you can, so I can keep up my argument!! x

[Seedlings in reply to Doglover1410]

I'll let you know what happens!. I'm seeing my oncologist in a few weeks time. Just a couple of questions. How long were you on Niraparib for?. Was it after front line treatment or after your first recurrence?. Are you on any Parps now?. Sorry for all the questions but I need to be able to compare notes!. Thanks so much for getting in touch with me.

Ann

[Doglover1410 in reply to Seedlings]

hi Ann

I was on it for 3 years and 3 months after 1st recurrence and was doing really well. I had a lesion on my spleen all the way through but last June my CA125 started to go up (it’s been my only ‘symptom’) so I knew something wasn’t right!

Had my spleen and tail of pancreas removed in September and have just finished 4 sessions of Carbo/Caelyx.

He says no more parps as it recurred on it, so would be good to keep in touch like you say to compare notes!

I had no side effects at all on it, and would love to go back on it but at the moment he’s winning!!

Good luck

Alison x

[Seedlings in reply to Doglover1410]

HI Alison, like you , when my dose was reduced to100mg I had a really “normal” eleven months and it was great. I’ll keep you posted!

Ann

[Tiny_dancer]

This is an interesting thread. Like the other replies my understanding is that if you have had a recurrence whilst on the PARP then it didn’t work for you and is off the table as a treatment option. I managed 9 months.

Keep us posted and good luck x

[Kaitlinsmum]

I think you are very lucky. I am experiencing my first recurrance after being on Niraparib for 2 and half years. My oncologist at Clatterbridge, Liverpool told me that now I have to have chemo and come off Niraparib they won't ever be able to put me back on it. Something about it showing that it hasnt worked. I think its about cost really. Hope there is an alternative for me once/if the chemo works.

[Seedlings in reply to Kaitlinsmum]

I’ll let you know how I get on. Ann x

[Purplepansies54]

Hello Seedlings

I am currently on Niraparib but I am of the understanding that if I recur I won’t be able to go back on Niraparib. I don’t know why . I do know that GSK who make Niraparib have changed their guidelines for use of Niraparib for recurrent ovarian cancer. gsk.com/en-gb/media/press-r...

I am sure you will be able to discuss this with your oncologist. It will certainly be interesting to hear how you get on.

Wishing you all the best with whatever your next steps are.

[Kaitlinsmum in reply to Purplepansies54]

Thanks for sharing this x