Hi, i know there are lot of womens surviving long term 7 + years despite multiple recurrences. Looking for some positive stories. My mum is 5 years survivor of stage 3 c serous OC. Currently facing her second recurrence.
Long term survivors of stage 3c or 4 recurrent OC. - My Ovacome
Long term survivors of stage 3c or 4 recurrent OC.
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ivanco1
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58 Replies
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Hi ivanco1, I am stage 3 , I am on cisplatin at the moment. I will be 3 years on this road trip at christmas and i have been on all the chemos so far I am good, out and about doing my walking, yoga. I know woman who are 10 years on and doing well, they have several recurrences. Staying positive is very important. I hope this will be helpful. I live in Ireland
Thanks for your reply Julia and wish you many many more years! We are from Croatia.
Hi Julia, is cisplatin a parp? Do you need to have brca gene to obtain in where you are?
Hi I am 6years on stage four, had 4 recurrences and currently on parp inhibitor. Try to stay positive and between chemo live your Life to the full! Good luck Pam x
Hi there, do you have the brca gene to be prescribed the parp?
All the best.
No I am on niarparib and this is prescribed for ladies who are not brva positive.Best wishes
Hi, they are talking about putting me on niarpatib, how have you been on it, many side effects?
Oh interesting, is niraparib not a parp inhibitor then?
Oncologist just told us that my mom's brip1 mutation doesn't qualify for the Olaparib, only Brca gene does. Was confused and disappointed. Good that you are 6 years on and doing well.
Yes, Niraparib is a PARP.
There are other PARPS available that your mum may be elligble for. You need to speak to your consultant or get a second opinion.
I would recommend a Dr in London if you need very good advice on them.
Nicky
Thanks for this info, I didn't know those were also considered "parps". We are in Canada so London is a bit far 
(but if it comes down to it I would make a long distance call!) but our oncologist tells us to wait and see, as she's been doing well so far after the firstline, and he hadn't put her on any parps. (but should she be on something is my question). I'm just constantly fearing the recurrance and want to know what treatment tools there are ahead. Thanks, be well.
There are various Parp inhibitors now. And more coming out all the time. Anything that ends in a ‘rib’, is usually a parp e.g. Olaparib, Niraparib, Rucaparib (NB they have different names in the US etc, for example Lynparza (Olaparib), Zejula (Niraparib), Rubraca. Are you on Facebook? There is an excellent group dedicated to women who are on parp inhibitors, and across the world and they are worth talking to. Many of the rules in different countries vary. And also change along with time. Sometimes (crazy though it is) you have to have had a recurrence to have access to them. Pm me if you like. I was involved in s NBC documentary about access to parps for Ovarian Cancer and I would join the Facebook group. You’ll get more knowledge on where you live in Canada.
Nicky x
Yes I'm on FB, what's the group? Is the documentary still available?
Thanks so much!
I will try and find a link, as the BBC link on iplayer only lasted awhile.
Here is the PARP facebook group facebook.com/groups/1735008...
Here is a link to the clip. The whole film seems to be elusive, so I have emailed the BBC for s link to share with you, unless you are a whizz with google..
I’m BRCA positive and I am on Niraparib.
Hi could I ask if you have to be platinum sensitive to get this parp. Thank you
Hi I am also on niraparib and am brca negative have you had the debulking op?
Hi where do you live to get this ! I am in Canada and they want to give me Lynparza but it’s not covered and I have been doing chemo for 5 years
Wish you many more years.
Hi im stage 3, had 2 recurrences , currently 5 years 2 months NED , on a trial for Olaparib. Originally diagnosed October 2007. Wishing your mum well xx Kathy xx
Great question and I wonder the same too for my mom. We are in Canada. She's stage 3b high grade serious with the brip1 mutation. So far she's had first line which ended 8 months ago and, knock on wood, doing well. Hoping both our moms continue to do well.
How’s your mom doing?
Hi Lind, my mom is still seemingly doing well, she has a check up in June. I worry every time it comes up to that appointment when we get that CA125 number. Her last one was very low back in February so I'm hoping it's still low. She's been doing some travel and visiting with friends. I'm always praying this lasts and lasts and lasts. How is your mom?
Long May her number continue to be low 🙏🏽 She just had her last chemo (front line treatment) infusion two weeks ago and her first doctor appointment/scan is in early May. Praying and hoping it is all positive.
I truly know and understand the feeling. Did she also have surgery? May her results remain good and promising.
Yes, she had optimal debulking surgery followed by 6 infusions. She was offered Avastin but due to the side affects opted against it. Obviously it was her choice - I wanted her to give it a go but she was strongly against it given some of the side effects and not knowing how she would react. Just praying and hoping for the very best. Isn’t it so hard to be a bystander? I’m looking into natural remedies...
After her treatment we looked into a naturopathic doctor who could do some alternative maintenance. She didn't qualify for a parp. She's been on vitamin C IV and mistletoe injections plus some other supplements. The naturopath we chose has experience and extra training with cancer patients which is why we went with him. In the meantime she's gone back for check ups with the oncologist. Hopefully you can find what feels right for her in terms of natural remedies .
I was diagnosed early in 2008 so over 10 years. I am on my 5th recurrence, taking hormone blockers to treat it, & feeling well. Di
Sorry I can't be much help as I haven't had any recurrence but I am/was Stage 3c and have been clear for 5 years.
I wish your mum all the best for the future. Zena xx
Hi Ivanco. I'm almost 7 years since diagnosis. Stage 3c. I've had 1 recurrence and currently on a trial drug as maintenance, which has worked wonderfully for me.
Difficult to know why the success. There have been a number of suggestions: I was healthy all my life until the OC arrived, so perhaps my body has been strong enough to cope; I've had a lot of positive support e.g. my hubby's been marvellous and I belong to an OC Support group of wonderful friends - we share our problems and then go home and our chemo brain forgets it all ! but we care for each other none-the-less ! Also, everyone at the hospital I attend is marvellous - it's almost like a family - oncs, nurses, Trials people and even the scan people - very hard to find anyone I could say a negative word about; perhaps the most likely reason is that my DNA is compatible with the drug I'm taking. My best wishes to you and your Mum. Pauline.
Grace-53• in reply to
Hi Pauline, do you mind telling us what trial drug you are on?
I am also from Australia (Perth), diagnosed in Feb 2017, currently on standard chemo for my first recurrence. Was in remission for 11 months after the first chemo.
Good luck to all ladies here! 😘
Grace
• in reply toGrace-53
Hi Grace. Pleased to meet you, shame it's under these circumstances.
I'm afraid I'm going to be a disappointment to you as the Trial I'm on is for Avastin and I see you've already had no success with it.
I too live in Perth. Which hospital do you attend? I'm at SJOG Subi.
I belong to an OC support group. We meet monthly at Milroy Lodge in Shenton Park. You'd be welcome to join us if that appeals to you. They're a great bunch. No costs to join. A forum is being planned for next year, nothing definite yet. Speakers for OC trials. Best wishes. Pauline.
Grace-53• in reply to
I can't believe how small the world is. I also get treated at SJOG. My treatment day is Monday.
As for Avastin, I can't say much at this stage; it got thrown into the mix quite recently. Sometimes it's impossible to say what does what.
Thanks for letting me know about the OC support group. I'll think about it.
Hugs
Grace
• in reply toGrace-53
Hi Grace. Fancy that! I'm in at SJOG on a Tues or Wed, depending when Dr Buck is in Geraldton. I think you're not with Dr Buck if Mon is your day - perhaps Dr Dean? - several members of our support group are with Dr Dean. Dr Salfinger was my surgeon. Michael, in the Ivy, tells me that Monday is a busy day. Enjoy the warm weather - seems to have been a while ! Best wishes. Pauline.
sticky3006• in reply to
Hello Pauline, how long have you been on Avastin for? Many thanks, sticky77
• in reply tosticky3006
Hi Sticky. Now I have to think. Wait a min - I'll have a look in my chemo diary. Right. I began Avastin end Oct 2014 - so exactly 4 years. The first 6 months were along with carbo/caelyx. Then 3-weekly Avastin only as maintenance, to date. It's worked so well for me. It has raised my BP & caused me a few problems there. Recently, the protein in my urine has been getting too high & I've had to do a few 24 hour collections of urine. It gives me a runny nose but as far as I know that's all. A god-send for me. Best wishes. Pauline.
sticky3006• in reply to
thank you. Thats amazing! We can only have Avastin in the UK for a year which is a shame.
• in reply tosticky3006
Hi again Sticky. Yes, I realise from reading posts on this site that 18 months seems to be the longest that women with OC have been able to sign up for an Avastin trial (I don't know about the USA). I've honestly not heard of another Avastin trial that is indefinite.
What I signed up for was that I'd remain on the trial for as long as I stayed within the guidelines (e.g. CA125, urine & blood pressure) and as long as the side effects were acceptable to me. At the hospital I attend, they think I'm the only one remaining on it in Australia. I've been warned that the drug company just might wind up the trial. But I think I must be very interesting for the drug company, so surely they'd want me to remain for as long as possible.
Best wishes. Pauline.
ivanco1• in reply to
Wishing you many more years dear Pauline!
Hi ivanco1,
I am an 18+ year survivor, diagnosed in July 2000 with stage 3c serous. I have had many recurrences and of course many chemo treatments, surgeries and radiation. I am currently on Lynparza but my CA125 is rising. This roller coaster is difficult - all you can do is hold on tight and enjoy the ride as much as possible.
All the best to you and your Mum.
Shar
Wish you many many more years! Thank you for sharing your story!
Wow what a story. I really hope they find something to treat you with as you seem like an exceptional woman who defies the odds! Good luck x
Hello TorontoShar. Can I just ask, did you have IP chemo? Are you BRCA positive? Any other treatments which may have prolonged your journey?
Thank you, sticky77
Hello Sticky. I did not have IP chemo. I am BRCA1 positive which does contribute to my responding well to platinum chemo and Lynparza - although I have been considered platinum resistant for the past 5 years. I have advocated for surgeries and radiation over the years, but most of my treatments have been standard chemos - carboplatin, cisplatin, taxol, caelyx (doxorubicin) - mixed and matched.
Hope this helps, Shar
Do you live in Canada and are you BRCA pos I live in Canada but can not get it covered
Yes. I live in Richmond Hill, Ontario. I started on the Lynparza in 2015, before it was approved by Health Canada. I am treated at Princess Margaret, and was accepted into the compassionate use program by AstraZeneca.
I am BRCA neg
Hi Ivanco . I was diagnosed in 2008 , and just celebrated 10 years with no reoccurrence at all . I was 43 and had FAH along with my appendix ..!
There is hope for us women , awareness is what’s lacking .
I hope your mum is doing well .
Hi,
I was diagnosed with breast cancer aged 36 in 1999 no recurrence, then diagnosed with ovarian cancer 3c in April 2013. I am BRCA 1
On my 4th recurrence, went resistant to carbo but am trying it again 5 years later and it’s doing a great job along with gemcitibine. I have had olaparib both on a two year trial which gave me a 2.5 year remission then had it last year for 10 months on the octova then I had growth again. I am still well and active , half way through my current chemo and will continue to do any trial I am able to 😊😊
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