Worried and looking for reassurance

[Star_22]

Is anyone able to share positive stories of having more than two reoccurrences? I’m worried about my friend and would love to hear about others who are still doing well despite it coming back.

[Leniko]

Hi- just wanted to say I am on my fifth recurrence of OVCA since 2008 and I’m still around.

[Star_22 in reply to Leniko]

This is exactly what I need to hear. Thank you x

[Pixiepurple]

Hi Star, just want to say your friend is lucky to have you. My journey is not that old so can't help you there but have seen many ladies on here with multiple reoccurrence and they are doing well. X

[Educating-Rita]

Morning Star

I was originally diagnosed in 2015, several recurrences, three major surgeries and loads of chemo. I’m still here and loving every day I have although sometimes it’s hard.

Your friend is lucky to have you,

[audhilly in reply to Educating-Rita]

Hi. I am beginning my 3rd year. I have had a second debulking surgery after frontline ama the good news is that it means a much smaller load for cancer. I feel fine for the most part. I am in a clinical trial that I believe I may be failing out of (pending my oncologist). I am wondering about additional surgeries to remove what’s there and periodically doing it again, as needed. I wondered what you did and if you think it’s been beneficial?

Audrey

[Katmal-UK]

I’ve ‘only’ had 2 recurrences since 2007 but have been NED since 2013 albeit on a parp inhibitor. I was told I had 2 years in Oct 2007 .

[PyjamaDay in reply to Katmal-UK]

Can I ask what parp you're on? And are you able to stay on indefinitely?

[Katmal-UK in reply to PyjamaDay]

I’m on a trial for Olaparib (since very beginning of Jan 2014). I’ve been told I can stop whenever I like as they believe I cured. I’ve decided not to stop taking it at present.

[PyjamaDay in reply to Katmal-UK]

Thanks so much for replying. You're in the UK? And did you receive Olaparib as maintenance after first line treatment or following a recurrence? My sister started Olaparib in Jan. Onc saying definitely two years only, so interested in people who are staying on it for longer, especially if they received it as first line

[Katmal-UK in reply to PyjamaDay]

No. I started on it after my second recurrence on the clinical SOLO2 trial, an international, multi centre, double blind (even your consultant doesn’t know if you are on it until the trial ends), randomised, phase 3 trial. SOLO1 you took it for 2 years, SOLO2 you take until it is no longer of benefit or you have a recurrence. The trial ended about 4 years ago but I have continued taking under a rollover study. Yes, I’m in the UK. The protocol for Ovarian is 2 years. This is my 3rd trial, I prev trialled Avastin in 2007/8 and Cedranib in 2012/13.

[Leniko in reply to Katmal-UK]

Avastin kept me in (OVCA) maintenance for years. It has now stopped working. I am currently on Opdivo/Yervoy immunotherapy, and the active tumor on my psoas muscle has shown reduction in size, and my CA125 is going down. . I was so happy to hear this. Needed some good news.

[Katmal-UK in reply to Leniko]

Avastin kept me NED for nearly 4.5 years. I firmly believe it would have been longer if my dad hadn’t been diagnosed with terminal cancer. I had my first recurrence a month after his diagnosis and my second a month after he passed away. Good luck for continued good results from your current treatment x

[PyjamaDay in reply to Katmal-UK]

thanks so much, really interesting to hear and so pleased it's worked so well for you

[JingJingLove in reply to Katmal-UK]

That’s amazing! Do you know your genetic status?

[Katmal-UK in reply to JingJingLove]

Yes I’m BRAC2

[JingJingLove in reply to Katmal-UK]

May I pls ask How long You use Avastin for maintenance to keep you NED for 4.5 years?

[Katmal-UK in reply to JingJingLove]

I trialled it for a year (clinical trial).

[JingJingLove in reply to Katmal-UK]

good for you! Bless you

[delia2]

I’m on my second recurrence but it seems like business as usual. I expect it to work and have some time off chemo. I’m enjoying life when it’s not the week post chemo!

[Irisisme]

Hi Star,

I’m not sure if this counts as I’ve never been clear of OC so when my disease starts to progress it’s not called a recurrence. It’s been 2 steps towards clear and then one back for the last 9 years. 2 recurrences isn’t that uncommon and many on this site survive more. Occasionally 1 forward and 2 back - none of us know what the future holds for us 😏

It’s lovely that your friend has you to worry about her but try to stop worrying and carry on helping her to live her best life with OC. We all need a friend like you (I’m very luck that way).

Iris🤗

[Leniko in reply to Irisisme]

I’m in the same boat. Since 2008, I’ve been fighting OVCA and recurrences. Grateful that todays meds are plentiful and effective. I hope this is helpful for those who are facing a recurrence.

[yo207]

Hi! I am a 12 year survivor of stage 3c OVCA. Still living my life as best I can. God Bless!