Primary peritoneal/ovarian cancer: Hi I’m looking... - My Ovacome

My Ovacome

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Primary peritoneal/ovarian cancer

Aliollie profile image
18 Replies

Hi I’m looking for some help please my mum has primary peritoneal cancer they treat it as ovarian cancer she has just finished 6 rounds of chemo her c125 count was over 500 and has gone down to 90 sadly the cancer has stayed roughly the same her oncologist said it was in a few places but small. They are putting her onto niraparib (zejula) they are hoping to keep the cancer at bay with these new tablets. I was hoping to find out if you can live for many years with quality of life on these tablets and are these the best for ovarian cancer the blood results came back and she doesn’t have the brca gene.

.

Would really appreciate any information and thanks in advance for any help.

Kind regards Ali x

18 Replies
Welshandproud profile image
Welshandproud

Hi Ali. Like your Mum I also have PPC diagnosed in 2016 and I am brca negative. I am presently on gemcitabine and Carboplatin which is my 5th line treatment. Niraparib was unfortunately not effective for me and I was taken off it when my Ca125 levels started rising and I grew 2 new tumours although my existing tumours shrank slightly.

Other ladies have had very good results on Niraparib and have managed progression free survival for extended periods of time. I really hope it is successful for your Mum but if it's not, then there are many more options out there. Sending you both lots of love xxxx Sian

Aliollie profile image
Aliollie in reply to Welshandproud

Thanks for taking the time to reply much appreciated I hope your current treatment goes well it’s nice to know there are other options xx

Welshandproud profile image
Welshandproud in reply to Aliollie

My pleasure and sending you positive vibes xxx

mupash profile image
mupash in reply to Welshandproud

HI SIAN,

JUST WONDERING... HAVE YOU HAD SURGERY TO REMOVE LESIONS?

LEE

mupash profile image
mupash in reply to Welshandproud

HI SIAN,

JUST WONDERING IF THEY MENTIONED TRYING OLAPARIB? ARE YOU BRCA

POSITIVE?

WISHING YOU THE BEST OF LUCK- LEE

Welshandproud profile image
Welshandproud in reply to mupash

Hi there Lee. I am brca negative. I haven't had oliparib but I did have niraparib. Unfortunately it didn't work for me and I still had disease progression. I am currently on weekly paclitaxel.

mupash profile image
mupash in reply to Welshandproud

HI- I'M SORRY THE NIRAPARIB DIDN'T DO ITS JOB. THE DOCTORS HERE SAY OLAPARIB HAS BETTER RESULTS. WHO KNOWS WHAT IS BEST? IF IT WORKS FOR YOU, IT'S GOOD. I HAVE HAD TAXOL AND IT IS A VERY GOOD DRUG FOR WHAT WE HAVE. I HAD IT AND IT WORKED VERY WELL. I'M VERY HOPEFUL IT WILL DO THE SAME FOR YOU. PLEASE KEEP IN TOUCH AND LET ME KNOW HOW YOU ARE DOING. DO THEY FOLLOW YOU WITH CA-125?

BE WELL, WISHING YOU THE VERY BEST OF LUCK!

LEE

Welshandproud profile image
Welshandproud in reply to mupash

Thank you Lee. I hope it works for me too. I've had 4 weekly sessions and will have a CT scan after 9 weeks to say how it is working. I will let you know how I get on. Good luck with your treatment too 👍

mupash profile image
mupash in reply to Welshandproud

THANK YOU...I'M LOOKING FORWARD TO HEARING GOOD NEWS BACK FROM YOU!!!

LittleSan profile image
LittleSan

Hi Ali,

My friend's elderly mum has inoperable PPC diagnosed November 2018. After weekly Taxol she is now on Olaparib as maintenance and her cancer, although still present, has remained stable. She feels well and has resumed her old hobbies albeit in a less energetic manner.

Hope your mum does as well.

💐

Aliollie profile image
Aliollie in reply to LittleSan

Morning thanks for replying does your friends mum have any side effects on the tablets? I hope that mum does well on this was hoping the chemo had cleared it all up. I don’t know if you remember but I spoke with you on the phone a while back how are you getting on?

Kind regards Ali xx

LittleSan profile image
LittleSan in reply to Aliollie

Hi Ali, yes I remember. Other than fatigue, Phyllis doesn't complain about any side effects.

I'm not doing fabulously, this last chemo has hit me hard. I'm in hospital and they're struggling to stabilise me in terms of electrolytes. Hey ho, I've had a bit of an improvement today. Xx

Aliollie profile image
Aliollie in reply to LittleSan

Sorry to hear that you’ve done so amazing with what your going through keep your chin up and hope you continue to improve today xxx

Aliollie profile image
Aliollie in reply to Aliollie

Morning how are you feeling today ?

Kind regards Alison

Di16 profile image
Di16

I’ve not had niraparib, so can’t comment on it. But for my ovarian cancer, I’m taking hormone blocker tablets (I don’t think these are suitable for everyone), & for me, though I still have tumours, these tablets are keeping them reasonably stable. I’ve been taking my current medication for nearly 2 years so far, & took a different one for 6 months before that. So I hope your mum’s tablets are able to keep hers stable for some time. Di

Aliollie profile image
Aliollie in reply to Di16

Thanks for your reply I didn’t know about hormone blockers there does seem to be a few options to keep this at bay many thanks Ali xx

mupash profile image
mupash in reply to Di16

HI DI16,

JUST SAW YOUR POST. CAN YOU TELL ME IF YOUR HORMONE LEVELS WERE NORMAL OR NOT WHEN THEY PUT YOU ON THIS. I HAVE MENTIONED HORMONES TO DOCTOR AND SHE BLOWS THE

IDEA OFF QUICKLY. I SOMEHOW THINK HORMONES ARE VERY INVOLVED IN THIS CANCER. IF YOU COULD TELL ME A BIT MORE, LIKE WHAT PROMPTED THEM TO PUT YOU ON BLOCKERS?

THANK YOU,

LEE

Di16 profile image
Di16 in reply to mupash

I don’t know what my hormone levels were when they started me on Letrozole, but they’re normally raised for me. I have a rare type of oc though called gct, where the tumours are made up of ovarian cells that produce some of the female hormones, & tests for these hormones are much more reliable indicators of recurrence than ca125, which is never raised. There are ladies with other types of oc which are, I think, called hormone responsive, who take hormone blockers, but I don’t know whether they do any particular tests before starting them. Di

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