I had my first scan ( CT with contrast) since July 2020 on 2nd December 2022 ( Prof Christina Fotopoulou advised me to have after seeing her on 21st Nov ).
Prof CF phoned me on 5th December to let me know the scan results showed there was no evidence of disease 🎉
I celebrated my birthday last Saturday ( 10th Dec ) so this was the best birthday present ever.
I was over the moon & even ended up singing & dancing along to the Christmas songs in the grocery store.
I was diagnosed with stage 3b HGS Epithelial Ovarian Cancer almost 5 years ago. I’ve had 2 debulking surgeries ( first one 6th Feb 2018, 2nd on 16th Jan 2020 with Prof CF). Chemo followed both surgeries. . I have been taking Niraparib everyday since July 2020 .
Feeling so lucky & grateful to still be able to properly live my life in the best way I can.
I wanted to share this good news with you all in the hope it will help others get through any challenges they may have.
Have an enjoyable Christmas with loved ones.
Please stay safe & well.
with love Lynne xx
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Lynne that's just wonderful news for you, and belated birthday wishes long may your recovery continue have a fabulous Christmas with your family lm delighted for you. Lots of love hugs xxx.
Great news! Long may it continue. Our histories are quite parallel. I’m also stage 3B HGSOC, diagnosed August 2018. One recurrence a year later and on Olaparib since April 2020. Xx
Hi Lynne, what a brilliant birthday & Christmas present 🎉. I am presently stable myself & starting on Niraparib in January so 🤞. Have a wonderful Christmas with your family & wishing you health & happiness in the New year Xx
excellent news!!!I can only imagine how happy-relieved and satisfied you feel!!may ask you if you are brca positive?and if it’s possible I would like more info about your doctor-her name is Greek right?is she from Greece because I would be interested to contact her-Merry Christmas in advance and enjoy your good results❤️
Prof Christina Fotopoulou is Greek and works out of Hammersmith hospital imperial. I used her private she's amazing! Just Google her and tge hospital will come up and the numbers x
Prof CF is an incredible woman. She listens intently, explains thoroughly & is the most amazing surgeon ( ( she operates ( if she feels it is going to help) when others say it’s not possible)) & has the best bedside manner.
Hope you continue to get through whatever is next for you xx
So very happy for you!!! Amazing news 🙌 I was waiting 😊 happy belated birthday and have a very Happy Christmas 🎄 love Rhian x ps I start niraparib on 19th already on avastin how did you find it ? 🥰
Hi Rhian, your good news post promoted me to share mine.
Niraparib has been working for me so I’m very grateful. For me the side effects were brutal at the beginning but, after dose was adjusted ( I’ve been on the lowest dose since Sept 2020 - 100mg per day now) it was much more manageable. I really hope it works for you as well as it has for me.
Are you Welsh by any chance? I was born there & lived near Pontypridd for the first 4 years of my life. Lived in England ever since but my Welsh blood is always there.
Take good care & all the best with Niraparib. Lynne xxx
So happy for you and your family. The feeling of relief must be amazing. You've been through a lot to get to this stage, so WELL DONE. can I ask what sort of surveillance you'll have now and will you be on any drugs long term? Did you have surgery done privately? XX 🌹
I have been on Niraparib for 2 & half years & will continue to take these ( for as long as they work). Due to being on these, I have my bloods taken every month & get to talk to the chemo nurses ( I’ve known most for almost 5 years ). I can see Prof CF whenever I feel I need to but she sees me every 6 months. I alternate appts with her & my chemo oncologist so I see someone every 3 months.
I did have surgery privately. Very lucky &, if anyone needs a second opinion with anything ovarian cancer related, please don’t hesitate to see Prof CF. She is incredible xx
Thank you so much for your reply. I was diagnosed in Nov 22. Had chemo and debulking etc done in March, finished chemo then went onto maintenance treatment with avastin every 3 weeks and Olaparib. Last CT showed nodularity and markers went up drastically. Asked for 2nd opinion from Prof C. She kindly reviewed my history and scans and declined to perform any further surgery at this stage. CA125 continues to rise, albeit slowly and hoping to have CT arranged soon. Wish I could have seen her to discuss in detail though 😕.
Great news Lynne! I am BRCA negative also and have been on 100 mgs. of niraparib since July of 2020. I have had a few breaks from this drug, because of UTI s and low hemoglobin one time. I believe my dr. wants to take me off this drug after I hit the 3 year mark, which would be July of 2023. I will probably have check ups and ct scans once in awhile to follow up. So far I have been doing ok and I was diagnosed in Oct. 2019. Sending best wishes, Donna xx.
So happy for you & thankyou for sharing. The sharing on this site (good & bad) is what makes it so special. We're all ready to send supportive hugs when needed but so happy to be able to cheer the good news stories that give us all hope. Congratulation Lynne & keep dancing. Love & hugs xxxx
Hi Lynn: I was dianosed with Stage 3 HG Serous ovatian cancer in January, 2021. Had the standard chemo treatments like you from Feb, 2021 to July, 2021. CT scan July 26 showed NED. Started 200 MG's of Nirabarib in September 2021. My oncologist reduced it to 100 mg's in August, 2021. My C125 has been consistant at 14. Have you been on 100 or 200 mgs of Niraparib and how long did your oncologist say you could stay on Nirabarib for. Has it affected your blood (ie platelets, hemaglobin) in any way? I asked my oncologist how long I could stay on it and she said two years. Im in Toronto (Canada) and wondering how long your oncologist lets you stay on Niraparib for?
I’m on 100mg Niraparib after first being prescribed 300mg ( in July 2020 which made me awfully sick) then reduced to 200mg ( which was also too harsh for me). Sept 2020 was when I started 100mg & that’s been much more tolerable. No problem with platelets, neutrophils or haemoglobin throughout. Still have my bloods done every month to make sure.
When I was first diagnosed ( Feb 2018) they didn’t prescribe Niraparib after frontline chemo. I believe if you are prescribed after frontline, 2 years (maximum) is the usual time to be on them. My oncologist said I can stay on mine for as long as they keep working. I started them after a second line of chemo. We are all different & our oncologists know what’s best for us individually.
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