Niraparib

Hi Wenders 

I have stage 4 Ovarian cancer which had spread to my peritoneal area as well. I was told mine is not curable but could be maintained so I went onto Niraparib after Chemo, I was on it for 2 months and then the cancer was active again with my ca 125 at 246 so I am back on Chemo. I had 3 sessions of Chemo and the tumours had shrunk, so had 2 more sessions and waiting on another scan date.

I do hope your CT scan comes back quickly as it is such a worry not knowing 

Take care 

Sue x

Hi Wenders   

Been thinking of you, hope you are OK 

Sue x 

Hi Wenders, just wanted to say hi and hope you are ok.

im in a similar journey as you, same grade stage 3c, had 3 chemo, surgery and another 3 chemo, was told today it’s treatable but not curable and I’m due to start on niraparib, it’s such an uncertain time and I totally understand how anxious you are, sending love xx

Hello there

Hope you're doing OK.  I have the same diagnosis as you and was interested to hear that you were advised it was treatable not curable.  My oncologist admits he is a 'glass half full' person and so far has said I am ''in remission" (my quotes) but recommended Niraparib.  So after my next scan in about 3 weeks I will go onto to Niraparib early September, 8 weeks after last chemo. It would be good to share our experiences as we may be going on a similar path.  

Thank you best wishes Mo xx

Hi Selernie

thank you for your message and hope you are doing well.

Did you follow the same treatment plan (3 chemo, debulking surgery, 3 chemo) ?

I started on 200mg of Niraparib but because my WBC is still low they reduced me to 100mg, aside from high blood pressure I’ve tolerated it well so far.

i had a ct scan about 8 weeks ago because I was having some pain around my lower rib area and it showed some thickening but they aren’t sure what it is, I have another oncology appointment on Friday.

my mental health/anxiety is really awful just now, it’s a daily struggle, I find myself consumed by the diagnosis and it’s difficult to try to be positive,

it’s nice to hear from you and I’m happy to chat to you, maybe we can support each other, it certainly helps me to chat to someone with the same diagnosis who can understand the devastation a diagnosis can cause.

best wishes 

Janet

Hi Janet

It's nice to hear from you 

I actually had 5 cycles before my surgery due to delays in dates for CT scan and debulking surgery, caused mainly by NHS overload...  I had my last (hopefully) chemo on Friday so just now awaiting CT scan and will start Niraparib early September all being well.

So sorry to hear about the latest worries I will keep everything crossed for you.  I lost my partner to pancreatic cancer 3 months before I fell ill so it's been a tough time.  Happy to keep in touch.

Take care Mo

Selernie,

im so very sorry for your loss, you are going through such an awful time, be kind to yourself and give yourself time to grieve (difficult i know when you were diagnosed in such a short space of time)

Im trying to change my mindset by telling myself that just because the oncologist is telling me one thing it doesn’t necessarily mean she is right, people do go in from this, that there is always hope.

️