Good evening, Lovely ladies. I just spent a few hours at Yale today as my 3 mos followup. I had recurrence in february and had 6 sessions of carbo/taxol which ended in June. I found out that I am platinum sensitive (which I always thought was a bad thing). catsCAN FROM aUGUST SHOWED THAT THE nodule which was 5mm was no where to be found. However, they told me that once there is a recurrence that the next one may not be as long as this one was (3 yrs). Said that I should go on Zejula which is a parb inhibitor. Said side effects are not as bad as those on the chemo. Just wondering if anyone out there is on this and what if I should know more about side effects. I understand my hair will not fall out. It just started growing back in. I feel I should take this positive step and head off any oncoming cells trying to get comfortable. By watching and waiting I feel I am doing nothing. Any experience and advice is greatly welcomed! Thank you all!!!
Marisa
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Zejula is called Niraparib in the U.K. if you look at Luchies post from yesterday you will find a few of us with our comments on the drug. It seems that once you find the right dose it is O.K.
I'm on my third line of treatment and taking a different parp inhibitor as part of a trial; side effects are minimal for me - a little nausea and fatigue but nothing compared to chemo. My understanding is that the parp inhibitors are used for both treatment (me) and maintenance (you). I think here in Australia you have to start taking the parp inhibitor fairly quickly after finishing chemo (8 weeks rings a bell).
You could always give it a try and if the side effects are too unpleasant go back to wait & watch.
There are no long term studies on Zejula. So there is no proof it extends life. What data is available appears to show it works best for BRCA positive women. There are some serious side effects, one stops your bone marrow from producing new cells. That would be fatal. Since I am not BRCA positive, the risks out weigh any benefits.
Hi, Tesla and thank you for your response. I am BRCA negative, but, they said it should work for me as well. I was just thinking about the fact there is no long term study on this. From everything I have seen on the FB page for Parp inhibitors, every seems to report that they have remained stable.
I guess I have to have faith and just do it. Not to take it would mean that if any evil cells in there are now able to reproduce.
There is data on Niraparib. In studies of all PARP inhibitors, they all come out with the same efficacy.
Niraparib is newer than Olaparib and the dosage has not been as uniform, causing many ladies to start on too high a dose and having to take breaks from it to get their bone marrow up to scratch.
They want me to get CA tested end of this month and get a scan if they have risen. I'm so twisted. Trying to go about my business but this is just always hanging on me.
Hi Marisa, whilst there may be no definitive proof yet that PARP inhibitors extend life, there are plenty of ladies who will tell you that it has worked for them in terms of extending the interval between recurrences. Even if you are not BRCA positive, the fact that you are platinum sensitive (which is a good thing) means that you should benefit from a PARP inhibitor.
Tesla's point about your bone marrow is valid, but the risk is small and your bloods will be monitored every 4 weeks to keep an eye on this. In my view the risks are much less than the risks of IV chemo.
My wife Suzanne is BRCA2 positive and has been on olaparib (another PARP inhibitor) for nearly a year now without any significant ill effects. The side effects are much less than IV chemo.
If your oncologist recommends niraparib I would say go for it.
Thank you, WoodyB, for your most encouraging and constructive advice. They tell me that I would have a blood test weekly. When I reacted to the bone marrow part, they reminded me that the risk was much higher on IV Chemo. I was so confused yesterday, but, I know today that I must do something to keep a recurrence at bay. Glad to hear your wife is doing well on this. Sending best wishes your way. Really appreciate your input.
WoodyB What dosage is your wife on? Do they start everyone at 300mg? I have only been on it 2 weeks, but I am SO anxious every day (feel like I'm on speed), getting depressed & thinking of stopping. Very hard to get in to my doctor, since there are so few in his area of specialty. He starts everyone on 300mg, but I already want to be lowered to 200mg. Now, if I can only talk to him. Does this type cancer always return?
Sorry, but I am freaking out- can't turn off the brain & stop thinking at night, so no decent sleep.
As I noted above, whilst there may be no definitive proof yet that PARP inhibitors extend life, there are plenty of ladies who will tell you that it has worked for them in terms of extending the interval between recurrences. A few lucky ladies have had no recurrences at all since starting a PARP inhibitor.
My wife Suzanne takes olaparib, not niraparib, so the dosing is different. I believe that 300mg/day is the maximum dose of niraparib and, even then, only for ladies over a certain weight. I think 200mg/day is commonly prescribed. Suggest you look at the Facebook page mentioned below and/or speak to your CNS or Anna at Ovacome. Good luck and don't stop taking the pills yet x
Hi, WoodyB....just checking in to see if your lovely wife continues to be well. I wanted to thank you for giving me the courage to go on Zejula. Now on 100 mg as my platelets dropped on the 200mg.
Hello Marisa, yes Suzanne is still doing well on olaparib (AKA Lynparza). Really pleased you got Zejula and hope it continues to work for you and keeps you well.
You're very welcome Marisa. I forgot to mention that there's a very useful Facebook page "PARP INHIBITORS - Drugs And Trials" where you will find much more information. Good luck!
Hi, Woody. I took your advice and found that FB page. Very informative and practical reporting. I know everyone says we don't have long term statistics, but, the journey begins here and sounds very promising. I do appreciate all your help.
Just wondering if you feel low on this drug! In the last five yrs I can say I been very up beat! But today I feel I could cry all day and don’t know why , ! Maybe it’s all catching , had a hard few mths xx
I was always upbeat last 4 years through 2 chemos. When I started zejula I felt like a zombie and was feeling quite low. After about a month I began to feel better. Guess my body was adjusting. Plus I started taking supplements such as b12 and D. Also c.
As always keep hydrated. Drink more water than you normally do. I take the pill at night which seems to work better for me.
Thanks Marcia, on third week , think also because I’ve just finished 4 line of chemo and gone on to niraparib am frustrated that the ca is going up already in bouts of 50! Now 220! Hoping it will start coming down. Thanks for replying god bless us all 😘😘
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Anyone on a clinical trial?
Has anyone been on Niraparib twice?
Is anyone on maintenance therapy?
