Good news: Hesitating as always before posting as... - My Ovacome

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Good news

Katmal-UK
Katmal-UK
78 Replies

Hesitating as always before posting as I am so very aware that lots of ladies are having a rough time. I went for my 12 weekly check up yesterday for SOLO2 trial of Olaparib. Dr walks in says how are you doing, Im good I reply. Well I think thats it he says and laughs. Ill give you another 3 months supply of Olaparib. I replied well thatll take me to over the 5 years on it by the time I come again in 12 weeks. Yes he replied, we dont see ladies on trials this long! Apparently Im in 1% of ladies worldwide who have had /are having this response. I practically skipped out of that consulting room. Currently 11 years 1 month from diagnosis, 5 years 3 months into latest NED, CA125 holding at below 3. Wish I knew (as does my dr) why I am so responsive. I am currently taking part in research, have had additional bloods taken, to help the medical profession find out why. Hang in there ladies. When I was first diagnosed I was told I had a couple of years left, but that new drugs were coming along all the time . Ive participated in 3 trials to date and if I need too will take whatever I can to not only help myself but help others. God bless you all. Kathy xx

78 Replies
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BeeWild

Fantastic Kathy xx I’m just starting on the olaparib journey (3 weeks in) and tbh not convinced yet it’s doing anything but making me nauseous! Your story makes me want to hang in there though xx so thank you for posting xx

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Katmal-UK
Katmal-UK
in reply to BeeWild

Hang in there, get some anti sickness meds that suit, I hardly get any nausea now :) xx. Good luck, hope it works well for you !! xx

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LittleSan

Ahhh Kathy this makes me happy! Fab news and long may it continue. Hope you're celebrating this weekend.

Much love and continued success.

Sandra xx

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harpist_UK

Inspirational! Like being top of the class :) So glad you made an oncologist smile - you made us smile too :)

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sticky3006

Brilliant! Long may it continue. Do most people become intolerant of Olaparib? x

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Katmal-UK

Hi. Some do some dont, results have been published showing good results. Olaparib was first made in 2006, some ladies on the SOLO1 trial are still cancer free 9 years on, tho were only given the drug for max of 2 years. Im on it until I decide to stop, have disease progression or become anaemic or develop leukeamia x

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sticky3006

Thanks for reply. Enjoy your day! x

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izzybruce

That's brilliant news so positive, research is key, long may it continue xxx

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Janet235

Wow that is such terrific, wonderful amazing heart warming encouraging crazy news

You are a unique body I hope the docs can investigate why and how you became such a huge responder to the latest drugs

Super califragilistic expilalidocious❤️💓💞💥 janet xx

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Cnmart

Wonderful, such great news - never hesitate to share!!! Xxxx

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Coldethyl

That’s great news - keep on doing whatever it is you are doing ! X

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ShropshireJo

That’s fantastic Kathy and so inspirational for those ladies just starting on olaparib. Thanks for sharing such positive news. Love Jo 🌺🌼🌸🌻🌹

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Lewisriley47

Fantastic news, well done Pam x

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Manchesterlady

Excellent news , so happy for you . Long may it continue 🌸🌸🌸

Love Sheila xx

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Eriksendi

Brilliant news ...... really pleased for you 🎉🎉🎉

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Puddle

Brill news Kathy, long may it continue x jenny

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January-2016-UK

This is excellent news. You must be over the moon. Now the scientists need to find out why you and other ladies have responded so well. What's different about your cancer and those that don't respond, or stop responding? As you say, new drugs coming along all the time.

Take care now and enjoy your celebrations. Skipping rope for Christmas?

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Katmal-UK

Ty, tho Not sure the world is ready to see me using a skipping rope lol

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lyn1987

Hi Kathy - what fantastic news, Long may it continue! Lyn xx

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Cropcrop

Wonderful news Kathy 🥂, it’s always nice to hear some positive news to give everybody a bit of a boost. Keep on doing what you’re doing lovely lady ❤️Xx Jane

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Lindaura

Oh Kathy,

That is such good news!

There is still a trial available in Oxford, not far from me, for Olaparib and I hope to lobby my doctor for it.

You have been a guiding light and tremendous help for all of us!

Thanks so much,

Hugs,

Laura

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Katmal-UK
Katmal-UK
in reply to Lindaura

Hope you get on the trial, everything crossed for you xx

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CJR99

Kathy,I am so pleased to hear your news.It's fantastic to hear on this beautiful sunny day.Long may your better health continue xxx

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HiddenThis reply has been deleted
Katmal-UK
Katmal-UK
in reply to Hidden

Hi. Ca125 was 7 when I started, Id been NED since Aug 2013 but completed 6th cycle of chemo in Dec and started Olaparib begining Jan 2014. I have changed nothing. I was originally given 2 years so thought im dying Im gonna enjoy what time I have, I dont drink, dont smoke, just eat healthily. xx

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CallmeMum

Fantastic ❤️❤️❤️ An absolute breath of fresh air xxx

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WoodyB

I had a guinea pig called Kathy and it lived for ever! Fantastic post Kathy, thank you so much for giving us all that so important word HOPE and, indeed, for bothering with staying on this website when you could so easily withdraw happy and healthy for ever more xx

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Katmal-UK
Katmal-UK
in reply to WoodyB

Ty, Ive often thought of leaving the forum but I stay to try and help /give support and hope to others and believe me when I say I need the ladies here too, those that understand what we are all going through, the fears, the feelings etc . xx

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WoodyB
WoodyB
in reply to Katmal-UK

Please please don't leave the forum. You are so inspirational xx

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Tesla_7US
Tesla_7US
in reply to Katmal-UK

I look for your posts. The emotional roller-coaster of this disease is devastating. I read your posts and am inspired. Please know that people like me look to you as an example of "anything is possible".

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delia2

Congratulations--that's fantastic news. I think we all love good news and hope!!!! xoxo

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Juleswhee

Wonderful Kathy , fantastic that your helping research too xx

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Joanie12

Fab news Kathy, giving hope to us is wonderful and uplifting, here's to your continued good health xx joanie

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Yoshbosh

Wonderful news, Kathy!

Now let’s just hope they can develop something as effective for non-BRCA women 🤞

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Seasun36-uk

Wonderful fantastic fabulous news Kathy!! Thrilled for you! So encouraging for everyone xoxo 🎉🥂🍾🔆❣️

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Welshandproud

Wow what a cause for celebration. That's absolutely amazing and gives us all hope. Well done you. Whatever you are doing don't stop!!!

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Maus123

Fab news, Kathy. Your story offers a tremendous amount of hope for us and I'm so grateful for you sharing your success. Long may it continue!

Incidentally, I might be aware of another long-term Lynparza/Olaparib survivor, who had given up all hope prior to starting the trial: Susan Gubar in the US, who is also affected by a BRCA mutation. She's a book author and columnist e.g. for a NYT cancer blog. I believe she started on the parp inhibitor back in 2013, and has been OC free since.

Keep going :) . Xx. Maus

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Katmal-UK
Katmal-UK
in reply to Maus123

Wow, I think I might look her up!

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Lyndy

Woohoo! Fantastic Cathy..always love your posts. I know there are a good many having a very rough time but there are also lots of us in the process like me..not good or bad but just putting one foot in front of the other...so having some really good news is so welcome xx

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SCWI

What brilliant and amazing news, Kathy, so thrilled for you. I have just started Olaparib and keeping my fingers crossed. Incidentally, you mentioned leukaemia, is developing this a possible side effect? No one has mentioned that to me. Also, do you take supplements? Grapefruit of any sort is a no-no together with various medications, but nothing else is mentioned.

Thanks, Sophia

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Katmal-UK
Katmal-UK
in reply to SCWI

Hi. I havent had a word said about avoiding any citrus fruits though I do tend to avoid them as following an anaphalatic shock on carbo I became allergic to the zest. There is a chance of leukeamia, surprised you werent told tho I believe the chance is only 1% so EXTREMELY rare. No supplements, just healthy diet. Good luck, hope it works well for you xx

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BeeWild
BeeWild
in reply to Katmal-UK

I was also told slight risk of leukaemia but very rare. Was also told no grapefruit or Seville oranges so I’m missing my marmalade 😁 but small sacrifice if it works xx

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gmc920

That is truly the best news, Kathy, and I am so happy for you! Thanks for sharing, it really does help to know that long-term positive outcomes are possible🤗 🥂

xx Gina

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Lizz49

Thank you Kathy for sharing your wonderful news and story of hope!! This is what we need, hope and positivity and the chance of a long term recovery ☺️ Thanks for your ever continuing support on this site Xx 💖

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suzuki

SO delighted to hear your brilliant news, long may it stay that way, so mind yourself and have a brilliant xmas

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Lorent

What fantastic news Kathy, so happy for you, gives us ladies plenty of positivity ..... Wishing you many many moré happy years NED ..... I'm on Olaparib since July Waiting for my scan results next Wednesday ...

Loren x

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Katmal-UK
Katmal-UK
in reply to Lorent

Fingers crossed for good results xx

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Perthgirl

So heartening to read posts like this. Thrilled for you and your family Kathy. Stay strong and stay well 🌹

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Debrunning

So happy for you xx

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Cheryl4677

Great news Kathy. Thank you for posting and let’s hope that we can knock the statistics into better shape. It’s so important we hear encouraging news. Thank you and all other ladies selflessly trialling these regimes that may make such a huge impact on our diagnosis. Congratulations! 👏🏼

Cheryl.

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tiger9

So happy for you. Do you get any side effects with Olaparib?

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Katmal-UK
Katmal-UK
in reply to tiger9

Hi, some but I can manage them. If you'd like details please message me x

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Hertsmum

It’s brilliant Kathy, that’s all I can say. Just to know that even one lady is kicking this rubbish disease’s ass and defying expectations makes me happy. I hate how it wrecks lives, and way too many, and I am delighted when I hear of a lady doing well on treatment - both for her and what that means for future patients. Don’t stop telling us this good news and don’t ever feel ‘guilty’ either., keep enjoying your life as I can tell that you do.

Love & hugs

Madeline xxxx😘

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Katmal-UK

Thanks Madeline, hope you are enjoying being back home, theres nothing like being in your own home xx

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Di16

Fantastic news

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ellseybellsey

Kathy what an uplifting post Iam so happy for you, my spirits and positivity are always lifted when I read posts like yours.Long may it continue.

Hugs Ellsey xx

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Maxjor

Kathy--congratulations. This is so wonderful--for you, and for all of us knowing something out there may be the match for us all. I love your post and am so happy for you. oxoxox

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ZenaJ

Fantastic news Kathy. So lovely to hear how well it's all going. Here's to many more. xxx

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Rachelwu

That’s wonderful Kathy, God bless you!

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Mptelesca

This is wonderful and important news to share! Kathy, this gives the rest of us so much hope! May you continue and stay well always! Please do keep us posted. I tend to hang on every word.....

XOX

Marisa

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Mptelesca

Kathy, I'm on a FB site called PARP INHIBITORS AND DRUGS. Everyone just keeps posting on any progress while on the inhibitors. You news would definitely contribute to the success of the group. Thank you, again!

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Katmal-UK
Katmal-UK
in reply to Mptelesca

im on there too :)

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Hopefulgal1

Wonderful news and please don’t ever hesitate to share good news! Amazing results and gives everyone e on Olaparib a little hope! Wish I cld join them but there you are - as you say new drugs all the time and I may join in taking a clinical trial on offer too.. you give me hope! Long long may this last and be healthy for years and years ...❤️

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Shellygirl

Great news 👍🏻xx

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Airvin110

Congrats - It's always nice to hear good news!!

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Zena41

Awww couldn’t be happier for you my lovely. You have been a great support to me xx

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JanePW1965

Great positive news Kathy. XXXX

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RonLitBer

It is always uplifting to hear positive news and to see someone get their life back. Your positive results are contributing in helping us all as the more research the better.

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Lily-Anne

I definitely don’t think you should hesitate to post ever. I’ve been hanging on to your shirt tails for years lol. Even though they turned me down for parp what you showed me is don’t give up even if the path looks pretty ropey.

I’m really pleased they are still working for you. I have followed a few trials with the help of AZ not for treatment but research and not only OC and was surprised by the patient drop out rate let alone pulled funding and poor success rates.

You’re a beacon of light with your positivity do keep on keeping on

Much love

LA xx

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JayGeeCee

Brilliant news. Absolutely inspirational. Thank you for posting.

Joy xxx

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MostlyHarmless

It's always good to hear positive news.

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Solange

Fantastic news, Kathy!! 👏 Long may it continue. You'll have given so many people hope.

Love, Solange 😊💐

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Hidden
Hidden

Great news! And thanks to you for helping out with further research. Keep it up!

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LindaB

Brilliant news! You are an inspiration xx

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Hi Kathy, Glad to read your positive post keep posting ..take care Lorraine xx💙💙

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Melody6

Fabulous news, Kathy - long may your remission continue 😀. Don’t ever hesitate to post good news! Wishing you NED FOREVER! With very best wishes, Mel x.

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March2017

Amazing, gives us all hope 💞

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rossnbren

Awesome!!

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