Had my telephone appointment earlier and unfortunately my CA125 has risen yet again, now 750, so am guessing that the Niraparib is not working. I feel well with no obvious symptoms, all my other bloods are good. The team want me to have a CTscan next week to determine what is going on. In the meantime they have told me to keep taking the tablets ( received a months worth yesterday?)
My question is can you change PARP? think that Rucaparib is the only other one available to me as I am BRCA negative.
If the Niraparib hasn't worked and I have to have chemo, so you think I will have to wait until the COVID 19 is at stable level.
My sensible head says just wait and see what the CTScan says, but 750 says it all really, doesn't it!
Oh dear Lyn, I am so sorry for you, and yes it is a good idea to have the scan because at least then you will know either way for definite. What a shame if the Niraparib is not working for you. Maybe you could change the Parp, it is certainly worth asking. I don't know what hospital you attend,but would it be worth getting a second opinion. Regarding chemo,not I am not sure about this at this time,but I do know of a lady that is still having radiotherapy 5 days a week for several weeks.
Anyway I hope that things turn out better than you think.
That’s a shame, Lynn. My CA 125 isn’t an indicator so I don’t know whether the PARP could still be controlling the growth of the cancer? I know in my case I did not reach NED with my chemo so they just want to keep things “stable.” It’s good they want to do the scan right away. Good luck!
My experience has been that only one parp will be offered and if that does not work, it is back to chemo. I agree with Laura try and get treatment asap.
I feel as time goes by, being pro active is a must for survival. I am still getting my chemo through these challenging times. Thankfully your scan will be soon. Best wishes.
Thank you Sylvia, I am not looking forward to more chemo as I have read that it will probably be weekly Taxol, which gave me dreadful Neuropathy in my feet, my hair all fell out as did all my eyelashes and eyebrows, just awful. But if it buys me more time then so be it.
Good Luck with your continuing chemo, fingers crossed it knocks the disease right back. x
So sorry Lyn, not the news you wanted. I would definitely get the scan & then you'll know where you're at. Regarding chemo, a friend of mine is having weekly taxol & because the dose is lower each time her side effects are much less so yours could be too.
So sorry you’re going through this uncertainty and anguish. Hold on to the fact you feel well with no symptoms . My Ca125 is going up slowly and I’m waiting for my next CT to see if the ICON9 trial is holding me stable. Further chemo would be my option if it’s not. I understand how you are feeling about hair loss again. Having used the cold cap with some success on carbo/taxol I lost most of my hair on carbo /gem and ended up with wispy thin hair. It’s just thickening up again now. I think it’s because there was no hiding the fact from those I saw and I found the pitying looks really hard to take. I look at myself and feel I’ve aged by 10-15 years! Keep your spirits up Lyn. We’re still in this fight and when Covid19 has slung it’s hook I plan to make the most of my time with family and friends and enjoy myself! Take care. X
Hello Cheryl - Thank you for your kind and inspirational words. The treatment over the last two years has certainly changed me, sometimes I don't recognise the person staring back at me in the mirror. I often feel I am living on borrowed time, just wish it wasn't spent isolated indoors, seems a cruel twist of fate.
I hope your trial is indeed working for you and your slowly rising CA125 is just a response to the drugs. Good luck x
Sorry about that Lyn, I know how that news makes you feel, as I have now had it three times.
Like you I have never been NED, and I am Brca negative. We do not have the parp option here, (or funded Caelyx for that matter). When my normal chemo options run out, we have said we will fund one ‘paid drug’, and the Oncologist said that Caelyx would be the best option. I asked why I would pay for an older chemo drug, which will cost not much less than one of the new drugs, as I can only afford to do this once. His reply was there was more chance of having a positive response with Caelyx than one of the parp drugs. The results for Brca negative people taking a parp is very limited.
On a more positive note, (sort of), Before I started third line treatment, I held out for a year to start. My CA125 was rising, but we waited until the CT scan started to show more. This meant I could still use carbo. My tumour marker went right down to 13 with treatment, however on the negative side, it started to bounce back up again once I stopped. The post treatment scan showed the liver Mets had gone, and there had been significant reduction in the other nodules/tumours. I am feeling really well at the moment and will again delay any treatment until the last minute. So if it was me, I would keep taking the tablets in the meantime, have the scan and wait for the results to make any decisions. Take care Therese. xx
Hello Therese - I had Caelyx and Carbo for my 1st recurrence, it was an easy regime, once every 4 weeks with few side effects, but my CA125 never went below 150 after 6 infusions, however it was 1080 when I started so not too bad.
My current PARP Niraparib does indeed not look as though it is working, but I feel so well I feel it is slowing it down and having a positive effect on my body as no side effects what so ever.
Here we only have two PARP's available to us BRCA negatives Niraparib and Rubacarib. Evidence shows that some BRCA negative ladies do indeed respond very well, sadly I am not one of them, you may well be.
I have today spoken to the team and asked if it is possible to get the CTscan results earlier than the proposed 3 weeks, they have agreed to telephone with the results a week after the scan.
Do you have the option of investigating clinical trials?
Hi Lyn
Sorry Niraparib seems not to be working for you, it didn't for me. I too am BRCA negative.
Got phone appointment with consultant Monday but have a feeling things are on the move again after 3 months watch and wait.
Really hope you get your scan and results quickly.
Lots of luck
Janet
• in reply to
Thank you Janet, seems us non BRCA ladies have fewer options available. Good luck with your appointment. x
Hi Lyn--sorry the ca125 is on the rise. Disappointing but there are other things to try. I have asked the question about another PARP--I was on Olaparib for 13 months total--and was told the PARPS are basically the same in how they work, so if one does not work, another probably would not either, however, if one worked for a certain amount of time, it's likely another will work for slightly less amount of time (my oncologist's words). I know there are no clinical trials accepting new patients right now in the U.S. and with the UK having even stricter rules, we can only hope it lifts soon. There are trials here for a drug that reactivates the efficacy of a PARP and its working well in trials. It's called Prexisertib cancer.gov/publications/dic... and is known to gain sensitivity to anti-cancer drugs that have stopped working--specifcally PARPs. I keep a list of these things to show my oncologist. Since you say you are resistant to many treatments, I am hoping you can find this down the road a bit.
Also--what about weekly Taxol Lyn--have you had that as a treatment yet? Can you tolerate Taxol? Please keep us posted. Thinking of you. oxoxox Judy
Thank you Judy, I will certainly mention Prexisertib to my oncologist as it sounds very interesting. I suspect weekly Taxol is next, I did get nasty Neuropathy 1st time round, but have been told that weekly is a much reduced dose, just not sure its available to begin at the moment. Hope you are as well as you can be. x
When you had Taxol before, did they ice your hands and feet? They re doing that at my institution and I do not have neuropathy after approx 12 doses. It's cold, but very worth it. If they don't provide it, maybe you can bring you own (if this is your next treatment). Mostly need to ice your fingers and toes and change the ice once it starts to warm. Pain in the arse but very worth it. oxoxox
Hi interested to see that they are icing hands your hands and feet to decrease neuropathy. I discussed this as a possible thing to do with my CNS and understood that it wasn't generally done. What is your institiution? and have you seen any scientific papers on it? Its great its making a difference for you. Thank you.
I have never been offered icing for hands and feet, I declined the cold cap as it added another hour to the time, and I am a terrible whimp, I did try some ice socks bought online but they were useless so I gave up. But thank you for the suggestion, and I am glad they are working for you. x
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CA125 ALREADY RISING 
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