So happy & relieved to hear the news I've been waiting for today - I'm NED, no evidence of disease 👏 This stage 4 clear cell cancer, often resistant to chemo, has left the building!
Just want to focus on this positive news for now & forget about what comes next..
Happy Tuesday from me! 😍
Absolutely brilliant news, so pleased for you! 🥰
Bravo x
great news!! Long may it continue
Great news. Celebrate!
So pleased to hear your good news 😊 x
Wonderful news. X
That's amazing, you've kicked its arse!! Enjoy your celebrations and long may it continue xx
Oh Kazzh I’m so thrilled for you! I’ve been following your journey from afar and willing you on.
Best wishes
Janine x
Great news, so pleased for you!!!
👍👍👍❣️
Fantastic news! I’m sat here smiling at yr news! Yr so right to focus on the here and now! X
Fantastic! You came,you fought,you conquered! Go enjoy the summer X
This is brilliant! So so happy for you!! Enjoy the day and stay happy forever ❤️
Brilliant news ! x
Just love this positive post, brilliant! 💖
That’s fantastic news! 🥳❤️
How fabulous! Enjoy the moment……🥂 xx
Enjoy this wonderful news.👏💜
Brilliant news. Love and hugs xx.
wohoooo ! Amazing news ! Enjoy it to fullest and treat yourself to amazing summer ! Let it stay away from you forever ❤️🙏
Congratulations! Long may it last. Enjoy every day!
Amazing news!!! 🙌🏻 lovely to read some positive news 👍🏻
Wonderful news so happy for you. Thanks for sharing xx
Thank you for sharing your good news! --Lani
So happy for you. Go and enjoy life to the fullest. 🙏
wonderful news!! Congratulations!
Great news, long may your remission last
That is amazing. I am so pleased fir you. The best reason ever to celebrate xx
That is absolutely fantastic news. Long may it last. xx
Thats brilliant news. ❤️🙏👍. May I ask what treatment got you NED. I'm asking g for a colleague not myself. Thank you.x
Of course, I had a combination of Carbo, Taxol & Avastin. It is unclear if I will have Avastin ongoing as maintenance due to side effects from it, head aches & sinus issues/nose bleeds 😬Niraparib has been suggested, not sure its the best one for clear cell, so will get some thoughts from ovacome's helpline tomorrow 😊
Brilliant feeling! I was going to ask the same question as win_56 so thanks for answering it. Hope Ovacome can help. The PEACOCC trial, completed last year and almost ready for publication, used Pembrolizumab on clear cell, which am sure the Ovacome team will know about. One of the lead researchers in this trial was Dr Rowan Millar who is on the Ovacome Advisory Board and several other researchers involved with their patients are supporters of Ovacome's purpose and work.
Am sure you'll keep enjoying the remission...long, long may it last. xx
Thanks Lesley, I hope I do as well as you have 🙏😁 Is Pembrolizumab an option as yet? Should I get a second opinion on my ongoing treatment? Which drug were you given if you dont mind me asking..sorry lots of questions!! Xx
Hi again Kazzh, after secondary surgery (see the Ovacome Information sheet ovacome.org.uk/secondary-su... I returned to the oncologist who had very strongly advised me against the surgery (that was interesting!!) and she recommended dose-dense carbo and taxol with Avastin. But such a lot of research which has supported new avenues of treatment, has happened since 2013. Clear cell, as I understand, is very, very hard to kill with carboplatin & taxol, with complete surgical removal being the most hopeful and then these new PARP inhibitors and immunotherapies (e.g. Pembrolizumab) being trialled more and more.
If you read the Ovacome information sheet, you'll see my GP was very supportive of a second opinion and it certainly saved my life. Ovacome know most of the gynae oncologists who put patients into the PEACOCC Trial (if they can't come back to me and I'll root out the minutes of our meetings) and I'm sure they'd suggest whoever is closest to you...or Dr Rebecca Kristeleit the Chief Investigator.
I know I was extremely lucky to choose Professor Fotopoulou as my second opinion, but more and more of us are living longer and the longer we can live, the more options the researchers will discover....at least that's what I keep telling myself. My GP always said that my job was simply to "grow healthy cells and leave the killing of the bu**ers to the medics!!" His advice was eat well, exercise well and rest well. He knew I'd find the 'rest well' the hardest and I reckon it took me a couple of years to explore how best the rest well while ensuring my brain remained stretched and active. This journey of exploration still moves me/motivates each day. Take care. xx
Interesting Lesley thanks for the recommendation. I most certainly will get a second opinion on surgery should the situation arise in future...which of course it won't 😉 🙏.. however I have now spoken in more detail to my oncologist who has explained alot more to me about side effects and their concerns so I feel more reassured. She is now saying she will likely start Avastin. Also they can only give it for 1st line treatment so if it doesn't work for me or the side effects are too serious then they have the option to go to Niraparib. I asked about the Peacocc trial but that is yet to be available, and I have to start on something pretty soon. Whatever happens I am so happy to be alive! I am just starting that journey of navigating the rest well advice.. I want to do everything but clearly can't and by 6pm I have to wind down for bed by latest 9pm 😴Like you, I love learning & exploring the journey and what I can do to make my life the best it can be..thanks again xxx
Thank you so much for sharing this, Kazzh. Lots of us, as well as thosse who know and love you are 'walking with you'... xx
This is wonderful news Kaz!! Now time to celebrate and enjoy every moment of now 🥂
so happy for you. Wish stays that way xx
Wonderful news So pleased for you 🎉
congrats 😀
Hooray! Congratulations! I have clear cell so am buoyed by your message 😃
Ahh that's great, how are you doing do you mind me asking what stage you are? I am fortunate, my journey so far has been straightforward, chemo - surgery - chemo and no additional issues 🙏
I’ve had my first session of chemo out of a planned 6. They don’t want to operate cos it may make things worse (it’s complicated) but will review it. I just want to get on with the second session now!
I hope the chemo does the trick & maybe they will be able to operate at some stage? Some things are never straight forward are they. Be prepared that chemo is cummulative so you will likely feel the effects of it more as time goes by. I certainly did, I had to accept what I couldn't do & rest up, I was exhausted! One day at a time, & try not to think too far ahead was my mantra. All best wishes on your journey 🙏🥰
Hi Florrie2
My OC isn’t CC, but 2 of my friends have CCOC. One completed chemo in January/February and has been put on Niraparib as maintenance. She also couldn’t have surgery but responded well to chemo. She’s doing fine, her hair is growing back, she feels well. I’m taking her for a day out this weekend.
Wonderful news Kazzh
I hope you had a swim to celebrate.
I will be very soon! 👏💦🥰
What brilliant news! So pleased for you. Xxx
that’s the sort of brilliant news we like to hear x
that’s brilliant news Kazzh , so happy for you. I came through surgery ok , I’m ok just feel like I’ve been hit by a bus. The surgeon is pleased, got all visible out, had to remove the spleen. Both celebrating 🥳
brilliant brilliant and brilliant xxxx
Just seen this, what amazing news! I'm so so pleased for you. Rest up and recover xxx
fabulous news xxx time to live a little xx
🎸🌷🎉💅🌷🌻
What wonderful news Kazzh! So happy for you! 🥰
@Kazzh!
I am so so so so happy to read this. What fantastic news for you. Sending so much love and celebrations!!!! xxxxx
Bless you all for your love & support. We may never meet in person (although nothing is impossible) but we have got each other's backs no matter what 🤗💞
Fantastic news. Good luck. Relax, recuperate and then, onwards and upwards.
Good News
Good news
Good News 
