Niraparib or Olaparib Question about progression

[Lindaura]

Hi Ladies, I hope you are in fighting good health!

So: for those of you who have either been in the trials, or simply been prescribed either of these two parps, and particularly for those who are BRCA1 positive, here is my question:

Has anyone had slow progression from the beginning with slowly rising CA-125 and growth visible of cancer nodules, in the first months under this regime, but then had the progression cease and the cancer begin to shrink after three months?

This is probably wishful thinking on my part as I am due for my four month chat with my Oncologist.

Just hoping that maybe it will reverse itself.

If not, I am planning to push for a switch to Olaparib.

I still feel that I tolerated 200 mgs of Niraparib too well, and my cancer needed 300 msg thrown at it, so if I can’t switch, I want a higher dose!

My appointment is two weeks away, but I still fuss over it...

Thanks for your help,

Laura

[Mptelesca]

So happy to hear your growth is shrinking! Wonderful!

I'm on Zejula. Alternating 100mg/200mg every other day. I couldn't tolerate the 200 in the beginning. I did read many posts and articles saying that the dosage is all according to what your body can tolerate and it's no less effective on a lower dose. I wish I could find the link. Also, the dosage is sometimes based on weight classes.

Good luck to you!

Marisa

[Lindaura in reply to Mptelesca]

Dear Marissa,

My cancer is NOT shrinking, I am just wondering if it will!

My Onc is using weight to decide the dosage, but my platelets have been totally strong, as have all my blood results, so I feel I can tolerate a higher dose!

Hope you are doing well,

Hugs,

Laura

[Mptelesca]

So sorry! I misinterpreted your question above. If your platelets are holding strong, then, you should be fine with a higher dose. Good luck!

[Doglover1410]

Hi Laura, sorry don’t know the answer but no harm in going in armed! Ask for the Olaparib if you think it would help, ask for the higher dose of Niraparib for a trial period, ask for 2nd opinion!

My CA125 has stayed stable (so far), but I still plan to ask after the Olaparib x

[Lindaura in reply to Doglover1410]

Thanks,

I really begged for Olaparib after my first recurrence, but it had not been approved.

I hope I can convince my Oncologist to rethink everything.

Sigh...

Best wishes to you,

Laura

[Maxjor]

Laura--from what I went through, and from what my oncologist said, it is rare to show a trend like that and have it reverse. One time up then back down is not uncommon but a trend is different. I hope upon hope I am wrong for your sake but that is what he said as I trended up 2 points every 3 weeks for a couple of months (then the ca125 started to climb at a faster rate). I felt that ANY time off chemo is good which my onc did too so I stayed on it, knowing I was relapsing for another 4 or 5 months---CT scan showed low volume disease which he said was due to the PARP (keeping it slow growing). If you can ask to try 300mg, I don't know why they wouldn't but I would ask for a ca125 within a couple of weeks of that so you don't risk more progression if indeed you are progressing. That 2nd opinion I went to when I started to relapse told me to try another PARP after my next bout with chemo, but my onc disagrees. He said maybe in the future but he wants me to try Avastin for maintenance after this regimen of chemo.

So I don't think PARPs are out of your life--you have tolerated the one with the most side effects so well--it makes sense to try another if this one is not working--or to increase dosage to see if that makes a difference.

Wishing you so much luck! You are always on top of it all and well informed so whatever decision you and your onc come to, I am sure will be the right one. oxoxoxox Judy

[Lindaura in reply to Maxjor]

Thanks, so much for that, Judy.

It was really helpful.

You probably know this already, but I am not a big fan of Avastin.

I think the trial results for it have been equivocal. I would be fearful if bowel perforations.

Personally, I think you should try another PARP.

We are also thinking about a second surgery...as the modules are so contained.

But thank you so much.

I wish you all the best.

Hugs,

Laura

[jools53 in reply to Maxjor]

hi judy, ? I was told days ago while in A &E I to have low volume disease , this is quite good news or not , im on niraparib jumping from 300/200 ca125 150 , raising heart rate , thinking of going on a beta blocker to help etc.Five yrs January feeling generally ok in & out of a&e for heart rate Taccyadrdia 1hoping in time niraparib will bring ca back down but having said that ct scans cant seem to see AS MUCH which is good. still lots ot options though even 2nd surgery, all the best jools xxxxxxxx

[Maxjor in reply to jools53]

I think low volume is very good news--if nothing else, it gives you time to research and make informed decisions about next steps for you. I am prescribed beta blockers if I feel irregular heartbeats and I only take when I feel it which is rare right now. You do have good options and my onc only goes by ct scan to see how I am doing but I use ca125 to prepare myself for the good or bad. Second surgery as an option is good too--you DO have many Jools! oxxxoxoxo Judy

[jools53 in reply to Maxjor]

thanks judy like all off us always clutching at straws and the next chapter we endeavour to wait for . xxxx

[Tabor]

Hi Laura, I’m sure the Dr is doing what they feel that’s best for you at this time. I am Barca 2 positive and was put on RuBraca 1200 mg daily. But this was after I had already been through 3 different rounds of chemo about 1 year apart due to cancer kept coming back. My scans finally showed clear and that’s when I was put on RuBraca. Not sure if any of this info helps, but I’m praying for best outcome for you!!! Don’t give up asking if you need more.

Pat

[Lindaura in reply to Tabor]

Thank you Pat.

I feel well armed. I just hope my Oncologist is receptive to any of my plans and schemes!

Hugs,

Laura