Quick check in x

[CallmeMum]

Hello lovelies,

Been ages since I've been on just wanted to check in quickly to see how everyone is x

[Lyndy]

Lovely to hear from you! I am good atm… ca125 had been climbing 17,18,20,21 but this month it’s down again to 20…how these little things change the way we feel! Hope you are ok? xx

[Hidden]

Thank you for checking up on us. I’m doing well. I’ll be three years on Olaparib in May. I’m not sure how much longer I’ll be allowed to stay on it but I’m tolerating it well at the moment. I hope that life is good for you.

[Lind58 in reply to Hidden]

Good news! Are BRCA +? How’s your ca125?

[RoseMS in reply to Hidden]

Dear WoolyHat, can I ask please, are you on Olaparib after frontline or a recurrence? If after frontline, who and why was the decision made to stay on it after the 2 year period? Are you UK based? I am coming to the end of my 2 years Olaparib after frontline and it will cease, which scares me! Thankyou in advance.

[Rankij11 in reply to RoseMS]

If you’ve never been NED You can stay on it Jennifer

[RoseMS in reply to Rankij11]

But what exactly is NED? We are all aware a CT scan does not show up small cancers, so how can anyone really be declared NED with a CT scan only? I would like to have a PET scan (never had one) at the end of Olaparib treatment to be more assured, but Onc will not do them, reasons are, too much radiation stated.

[Rankij11 in reply to RoseMS]

I think it’s at the end of treatment there is no evidence of disease by the means they have to establish this . This is never going to be 100% exact . But of course this leaves you in limbo land . Could you get second opinion re the scan /continuing Olaparib. I’m with you on this , it must be nerve wracking having your safety net removed. I guess they weighed up detrimental effects of staying on Olaparib versus chance of recurrence after trials . And then of course there is the cost of it ????Jennifer

[ZenaJ]

Hi, I hope you are okay. I'm like you haven't been on much. Everything has changed so much since I had my chemo 9 years ago. Just had my CA125 and it's still 8, so all well here. Good to hear from you. Zena xx

[delia2]

It’s nice to hear from you! I’ve been on Olaparib for two years and still ned. Xx

[RoseMS in reply to delia2]

Delia, are you now stopping Olaparib after the 2 years?

[delia2 in reply to RoseMS]

No I’m supposed to stay on it indefinitely but I wish I could go off it.

[RoseMS in reply to delia2]

Why are you on it indefinitely please? Also, can I ask if you are in UK?

[delia2 in reply to RoseMS]

Hi. I’m in the US but I believe the policy is the same in both countries based on the trials used to approve Olaparib. Those who take it after frontline do so for two years while those who take it after recurrence stay on indefinitely.

[Katmal-UK]

still here, now in my 15th year!

[Neona]

Great to hear from you. My latest scan on the Patriot trial was ok with no changes but I continue with low magnesium and dehydration problems. Enjoying the beautiful Spring flowers.

[Pianoplayer731021]

Hi, great to hear from you. I have been on Niraparib since July 2020. I believe they might take me off after two years. I was NED after major surgery and seven rounds of chemo. My CA 125 has been hovering around 13 through 16. I have some osteoarthritis and this could affect my numbers. I am 75, so this is expected. I was stage IV after surgery, so I feel very blessed that I am still fighting onward. Hope everything goes well for you, Donna U.S. xx

[Petrolhead]

Still rocking. 5 years for me. Fay

[CallmeMum]

Ahh fantastic so pleased everyone is all good xxc