PARP question

[rosebine]

Im probably going on Niraparib, which has to be started within 8 weeks of last chemo apparently. Wondering how they will know if it works as after last lot of chemo I had 6 months without progression, therefore if similar happens again it wont be clear if the PARP is working or not ? I dont think Rucabarib has to be started so soon does it ?

[win_56]

Yes all parbs have to be started within the 8 weeks of last chemo including Rucaparib which I am taking. They normally will scan you about 3 to 4 months later.

[Caleda4 in reply to win_56]

Hello Win, How are you feeling today? Have you managed to speak to your cons yet? x

[win_56 in reply to Caleda4]

Hi Caleda, thanks for asking. Yes I spoke to Oncologist and she told me to take Buscopan when I get the cramps. The past few days have been ok, thank the Lord! I just get so very tired though. I do try and get out each day for a 30 minute walk though. My platelets were down to 103 last week, if they go down further to under 100 i guess I'll have to stop again until they recover and possibly reduce dosage to 600mg. How have your platelets been?

[Caleda4 in reply to win_56]

I am pleased that your are feeling better regarding stomach cramps as that must have been horrible for you. Fingers crossed that your platelets will be ok to. My bloods were within the normal range at the end of January,but it will be interesting to see what the results are at the end of February now I am taking the 800mg each day. So far I feel ok thank goodness,but you never know.Take care.x

[win_56 in reply to Caleda4]

Good luck with the 800mg.

[Caleda4 in reply to win_56]

Thank you.

[Caleda4 in reply to win_56]

Hi , I am on Rucaparib. I have monthly blood tests, so the results also show the CA125 result which should give an indication of what is happening. I hope that the Niraparib gives you good results.x

[delia2]

Hi. You can only go by statistics and on average people’s remissions after chemo are halved each time so you could only expect three months with no maintenance though nobody knows for sure. I had 9 months after frontline but wasn’t ned after chemo the second time. Olaparib got rid of the remaining cancer. I’ve now been on it ten months. Good luck with it!

[Kkaren in reply to delia2]

Hi I’m a bit confused when you mention remissions are halved after chemo. Do you mean that at the end of chemo without maintenance medication you will have a recurrence. Sorry I am probably being thick !!

[delia2 in reply to Kkaren]

I mean that if you had a year ned after frontline you’d probably have around six months ned after chemo for first recurrence then three months for second recurrence. But of course there are exceptions because this is an unpredictable disease.

[Kkaren in reply to delia2]

Aw ok I understand now. I had 16 months between initial chemo and second so I assume you are saying I will have eight months before I need more chemo. Currently struggling with niraparib. I appreciate we are all different. Thank you

[delia2 in reply to Kkaren]

That is without maintenance and it’s just a rule of thumb

[Numi]

I've been on Niraparib since October 2017, after chemo for my first recurrence and my CA125 stayed the same for the first couple of months and then started to go down more . I had a CT scan when I finished chemo, and another a few months later. On Niraparib, your bloods are monitored very closely so anything unusual will be picked up very quickly. Mine were done weekly for the first month, then fortnightly for a couple of months, then every 4 weeks before each prescription is issued.

[rosebine]

Got to see Consultant tomorrow as it is exactly 8 weeks since last chemo. We have a lot of snow here and Im just hoping the roads are cleared so I can get there, notorious steep hill on the way which is impassable in bad weather !

Delia, didnt realise that average time was halved, that probably means if the PARP doesnt work I will have no remission at all if I have a third line.

Am getting more scared now about the outcome for me as its getting nearer. I think that on the surface Ive been worried but not scared because deep down I cant believe its happening to me. Id always thought Id drop down of a heart attack ! Is it easier just to go with the flow and let it happen instead of "kicking the can down the road"

[delia2 in reply to rosebine]

Sending hugs. Remember everyone responds differently to treatment. I hope you can go on Niraparib.

[Kkaren]

I started niraparib in November 2020 which was twelve weeks after chemo. I am getting panicked now having read the comments that this should be within eight weeks. Due to complications it was not possible for me to start any quicker. Has anyone else started later than eight weeks.

[Bettyxxx in reply to Kkaren]

Hi KkarenI started it 12 weeks after chemo, my consultant said preferably within 8 weeks but up to 12 weeks, i only took it for a year re side effects but still clear 15m after stopping

Diane

[Kkaren in reply to Bettyxxx]

phew glad to hear that as I was starting to think I was the only one. Great to hear you are doing well after stopping. Not sure after only two months how much longer I can take it due to side effects. Thanks for replying

[rosebine]

The ladies taking Niraparib and having bad side effects did you have bad side effects with chemo too? Just wondering as I had a fairly easy time with chemo compared with a lot of people and wondering if it will translate into easy time with PARP!

[Pianoplayer731021]

I think I started niraparib about 9 or 10 weeks after chemo, because of a few delays with the pharmacy. I seem to be ok though. I just had mixed messages between out of state phone calls to start this drug.