We’ll ladies, 15 years today since I had my diagnosis confirmed and still going strong despite an initial poor prognosis, 2 recurrences and a grade 3 anaphylactic shock which nearly saw me off . I find it almost miraculous to be sat here writing this but here I am. I hope my post gives at least one person hope. Things have changed, treatments are better. I am currently on maintenance drug (Olaparib, 8 years 10 months) with a CA125 holding at below 3. This time round I have been NED 9 years and 2 months. Here’s to the next 15 years !
Stage 3b 15 years !: We’ll ladies, 15 years today... - My Ovacome
Stage 3b 15 years !
Written by
Katmal-UK
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77 Replies
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There are no words to say how happy I am to read this! You are my inspiration!! 🎉🎉🎉🎉🎉🎉🎉🎉
Hi Katmal,
Thank you for sharing your wonderfully uplifting post, I’m so happy for you! You inspire, advise and give us all hope!
I’m currently three years NED after the usual debulking operation, Carbo/ Taxol and Olaparib maintenance for two years.
I still get panicky moments but reading your posts give me hope.
All the very best for a healthy, happy future!
Denise xxxxx
It is great to hear from you and wonderful to hear such excellent news! You are certainly an inspiration to all of us. Enjoy your life to the full! And thank you for all your help on this forum. 🌻
How wonderful, its so easy to forget that there are long term survivors at the late stages because probably they dont post on sites like this if all is going well. Ive been feeling very depressed recently but this has cheered me up. Thanks
Wow that’s amazing news 💕 lovely to hear such positive stories are out there xx
I’m so happy to read your update, Kathy! When I joined the OVACOME forum in 2020, I read your bio and have read so many of your helpful posts and replies. I feel as though I know you and I hope your NED status continues for many years to come.
Best wishes from New Orleans, Louisiana
Sashay
It’s amazing and you are amazing! You have always been ready to share your story with others and give us hope ❤️
Dear Katmal
I feel positive, optimistic and find it uplifting when I read your posts & agree you inspire, advise and give us all hope.
I think it’s marvellous that you continue to read the forum so regularly and give advice when you have been NED for so long. Please give yourself a pat on the back – you should know how much it is appreciated to hear from the statistical minority who have your lengthy personal experience and knowledge and still grounded and keen to help others in their journey.
My understanding is that most in UK are only given oliparib for a maximum of 2 years – I hope your PFS in the trial you’re on leads to clues & answers as to why it continues to be successful for you, so your experience extends OC treatment for all. Then maybe you’ll feel as proud as you deserve to, already – the word “Thank you” is not enough! 👏👏👏👏👏👏❤
Thanks x. As well as continuing on Olaparib I also gave permission for additional bloods to be taken for further tests to be done to try to understand why I have responded so well. U are correct that most ppl in UK are on Olaprib for 2 years (which is seeing good results). Im on a trial whereby I take it until its no longer of benefit. Its not without risk but its one im willing to take. X
Your a little star Katmal, and long may it continue, 5 years for me and like you dont intend going anywhere apart from our holidays.
This group gave me the inspiration to carry on when times were rough, and we both know its not an easy journey but hey were here to tell the tale aren't we. God bless you and keep you positive we really can do this. Don't goggle it will frighten you to death love& hugs to you sll SheilaFxxx
Hi Katmal I am now 10 years since diagnosis of stage 3b and have been NED 5 years despite 2 recurrences. Im feeling so well (touch wood 🪵) with a CA125 stable at 5! So pleased for you, seems there can be good stories to this horrible disease xx I’ve been on letrozole for 5 years and the onc said I can be on it for at least another 15 as my bone density is good and no side effects 👍🏼 😊 xx
Fantatic to hear! I hope you continue to do well! Your journey sounds a lot like mine!
Fantastic Jo think we can show the newbies that we can do this forget facts and figures were living proof and things and trials are getting so much better all the time stay well keep positive yes the going tough at times but you can feel normal live with cancer keep buying the frocks and booking the holidays we can and will win the battle love ❤ and vitual hugs to everyone and special mention to my little Pal Manchester lady who's just done a trial and is just so incredible no one said it was going to be easy but worth the end result love SheilaFxxx
Hi Jo,
So happy for you! If I may ask did you start the Letrozole when you had the recurrence? I'm 3B currently NED 1 year.
Hi I started the letrozole after my 2nd recurrence. I had chemo then an op to remove any little bits left. After this I started it. Fingers crossed for you, a year is a good start xx 💗
Jo, Thanks for the info about the Letrozole and when you started it may I ask what sub type you are? I’m Endometroid low grade 3B
absolutely, I’m serous low grade. I started letrozole in November 2017 xx
Absolutely fantastic. That's what we all want to hear. Long may it last. It's great. xxx
Your story is so amazing. I think about it literally every day as I wonder how long Olaparib will work for me. I’m guessing you are actually cured! Long may it continue!!!! Xxx
Fantastic results 👏 🥳congratulations! Weare lucky to have you here to help us with your knowledge and encouragement 🥰 X
Congratulations! That's a remarkable journey! Posts like this really help me cling on to hope. Long may your NED status continue! xx
Well done Kathy,
You certainly an inspiration to all, so thank you for posting. I think you should definitely go out and celebrate.
I have done 7 years since diagnosis and feel very lucky. Having had 2 recurrencies. X
Just wonderful,your a team together it does help in our battle lm 5 years this month and dont intend going anywhere apart from holidays. I do have a complicated hernia to sort out but hopefully lm very confident in the Proffesor that's going to do it. Holidays are booked for January . So l keep positive and well and send my love to you both. My husband beat pancreatic cancer 30 years ago. And things are improving every day. Love & hugs to you both SheilaFxxx ❤
It was wonderful to read your post especially as I had my 6 monthly CT scan today and was feeling anxious. You are such an inspiration to us all. It has been 3 years since my recurrence and over 6 years since my initial diagnosis. . I have been olaparib since Feb'20 and tolerate it really well and monthly bloods tests have all been fine.
I’m so happy to read your update and you do inspire so many on here! 15 years gives us all hope that this can be managed as a chronic illness and as you said the treatments have advanced so much in recent years.
I’m approaching 5 years and always remember in the early days reading your posts with so much hope, so thank you for continuing to give hope and remaining on the site when you could have so easily decided to avoid it- here’s to the next 15 years!! 🎉🥰
You are my inspiration thank you! I am 3B Low Grade Endometroid currently 1 year NED since my last treatment of Carbo/Taxol I'm on the watch and wait CA125 is a good indicator for me 4300 when diagnosed staying around 11 saw my Gyno/Onc today all ok. I am so very happy for you!
what an amazing post to wake up to this morning. Fantastic news that gives so much hope. Well done you & long May it continue x
Thank you for such a positive post! Long may it continue! I shall pass on your good news to my fellow Gyn and Tonic girls.(Local support group) 🥰
Tell them to never give up and to remember they are individuals and not a statistic x
Just amazing! Long May your NED continue.
I dont think you can ever underestimate how important ladies like you are to the rest of us the fact that you could put this behind you and move on and you selflessly keep your self in the picture to help and support us is pretty damn amazing ye are the real heroes xx
Wonderful gives me hope
Very happy for you, best news! Here's to the next 15yrs xx
Congratulations Katmal! This is so inspiring. Would you mind sharing what your treatments were for your recurrences? I am on my first recurrence and my doctor told me I would be on a lifetime of chemo. I want to believe that I’d untrue and that one of these chemos will remove all the cancer. Thank you!
Hi and thank you for your congratulations. For my first recurrence I had carboplatin and gemcitabine but had to swop to cisplatin/gem after I had a grade 3 anaphylactic shock on the carbo. I had 15 shots of adrenaline to get me back to stable. I then took part in my second trial (having trialled Avastin in 2007/2008) for Cedranib. For my second recurrence I had Cisplatin alone and after my third cycle became NED but completed the 6 cycles. I then started on a trial in Jan2014 (SOLO2) for Olaparib and have remained on this drug to this day. I will stay on it until it is no longer of benefit or I decide to stop. Yr dr may mean that you will be on maintenance therapy and not standard chemo, I think you need to question him. Good luck with your treatment going forward xx
thank you Katlal. This is encouraging. I came off of Zejula and I’m told that I can’t return to it. Many of the trials are immunotherapy such as Avastin and I’m not a candidate as I have had two prior bowel obstructions. I’m on gem/carbo now with no side effects. After this next cycle I will have a pet scan and hoping I follow in your foot steps! Anyhow I’m so happy to learn that there’s a possibility of being NED!
you deserve an Ovacome Outstanding Award for your continuing to post and constant encouragement to all of us. What a star! Please be aware how very grateful we all are to you! Emma x
9
Amazing! Such hope for us ladies taking Olaparib. I have been taking it for 2 years 4 months, feeling great with a ca125 of 4. Wishing you all the best for the future xx
what a truly inspiring story for us all. Thank you for sharing your wonderful news, showing there is hope for us all.
Dear All
It’s totally amazing and inspiring to hear of all these success stories. I just wanted to put out there how much we owe to the NHS . Sure it has blips every now and then , but the majority of us are here because of it . Let’s support it so it is there for the next ladies who fall foul of this sneaky and invidious disease
Onwards ladies !
Jennifer
Hello Kat, it is always good to hear from you, so glad you remain well. X
Thank you for your post! So this gives me hope also! x
Love It, lové It, lové It.
Absolutely wonderful news! So pLeased to read another inspirational post. You’ve been through so much but your spirit shines through. Thank you so much for sharing. 💐💐🎉🎉👏👏
Hi Kathy
Wonderful to hear your fabulous achievement. Gives us all a well needed dose of positivity.
Siobhan x
you gave me hope,🤗 I'm on my first hard to erase first recurrence, for More 15 years!!!
Congratulations my dear.Cheers to Your Health.You are our inspiration ,positive and strong fighter.God Bless You.Always Be Well and Thank you for Great Knews
👏🤩😘🌺
Fabulous to hear, Kathy. You really are a trailblazer for olaparib! Would be ironic if that Doc who gave you the original poor prognosis has popped his/her clogs by now.
Suzanne is still managing to follow in your footsteps and remains stable with a low CA125 (though not as low as yours) after 5 years on olaparib. She keeps very well and her only real side effect is chronic insomnia - which could, of course, be unrelated to the drug.
Your posts have always given hope to so many - thank you so much. Woody x
how fortunate are you. Well done & long May it continue. Iside X
Oh that's brilliant news, thank you for letting me know as it does indeed give home, I'm almost 5 years in and getting worse, chemo twice, second one not helping and an op I was offered in June has got cancelled 3 times now and I'm almost given up. Thank you so much for sharing 
Wow, thanks for sharing. Blidy marvellous! Xx
Kathy
You are such an inspiration, thank you so much for posting. I've been on Olaparib for 30 months & when people ask how much longer it will work I tell them about you & it cheers us all up.
hi katmal
congratulations xx and yes heres to another 15 you are the one to watch! So happy for you, i was 3b and coming up to 9 years at Christmas
Lots if love
Diane
fab and inspirational
Katmal I always read your posts & replies & you have always given me & others hope & encouragement when things are tough. Its always good to read the good news stories too & you are a very strong woman who gives strength to others. I hope you have celebrated this brilliant 15 yr milestone by doing something special. I wish you many more healthy & happy years ahead. Hugs 🎉💐
I needed to hear your story today. I have been in remission from uterine cancer for more than 2 years, but I recently got a CA-125 result of 39. This has me very worried.
i have everything crossed for you, please let us know how you get on. Big hug xx
Inspirational and all the power to you. Keep this beast at bay.
And here 's to the next fifteen years. Gwen
Hi Kathy,
So pleased and glad for you and may you remain in remission for many more years to come. Thank you for posting its gives us alot of hope for the future and peace that its not all doom and gloom. Jas
Absolutely fantastic, you give us hope and such positivity. Thank you for sharing your wonderful news 👍🥰. I enjoy reading your posts and wish you continued health and happiness love Mish Xxx
You're amazing. Certainly well worth celebrating. Oliparib is working well for you and that is so encouraging to many of us. My avastin and oliparib journey is early on, and I'm grateful for the opportunity to be treated with it. Fantastic!
Brilliant. Looking forward to a similar post in 10 years time. 🤩
very thrilled to read your post and very happy for you.
So encouraging to read that despite initial fears and setbacks you never gave up.
Best wishes x
You are very simply, our inspiration. Thank you for always sharing such hopeful news that keeps us all going. Congratulations lovely lady. 💕🌈
Thank you so much for sharing it gives us all hope 🙏
fabulous, love this xxx long may this continue x xxxxxx
amazing 🥰🥰🥰
That is the best!!! good news story I have heard in a long time. I am so happy to hear you are doing so well xxx
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