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My Ovacome
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Update

Hi lovely ladies. I hope you are all as well as can be. I just wanted to let you know that my CA125 today is still at 8 and has been for over 5 years now. How lucky am I? I wish it was the same for everyone.

My oncologist said it is unlikely that my cancer will return but not impossible and I am just wondering it others have been told the same? Although I'm always upbeat and optimistic there's not a day goes by that I don't think about it.

Wishing everyone my best wishes, Zena xx

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Oh that's fantatic news! My mum reached 5 years and was told the same and her OC didn't return. TBH a cancer diagnosis is probably something that will always be on our minds . I wish you nothing but the very best xx Kathy XX

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Thanks Kathy. I'm so please for your mum xxxx

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Wonderful news! Long may it continue x

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Thanks very much xx

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congratulations 💞💞 so happy for you xxxx

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Thanks so much xx

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Great news , long may it continue 🙏🙏🍾🍾

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Thank you, I do hope so. xx

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Congratulations, Zena,

You are one of the luckier ones!

I was told that being BRCA Positive makes you respond better to treatment, even though it gave you the cancer in the first place.

But still, you are amazing!

Best wishes,

Laura

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Thanks Laura, yes she told me that too. You you are doing well. xx

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Yay! Well done, Zena. Here’s to the next 5 years of being cancer-free. Vicki x

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Thanks Vicki, I say the next 10 years. lol. xx

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That’s fantastic, Zena, well done. It’s so good to hear success stories. Love Jo 🌺🌼🌸🌻🌹

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Thanks Jo, I just wish there were a few more success stories. I think though that once it gets a certain way down the line some like to put it behind them and leave the site so there are more successes than we hear. xx

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I think you’ve hit the nail on the head. As the years go by, the anxiety about recurrence begins to fade. xx

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Let's hope so. xxx

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Congratulations Zena, that's lovely to hear. Here's to many more healthy years! 😊🙌🏻💕

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Thank you very much. xx

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Yay Zena! Congratulations! Absolutely love reading your great post! Blessings!!

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Thanks Elayne, I hope to reporting the same news in 6 months. It's been an extra year for me because of the trial so I'm lucky there as well. xx

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Fantastic news Zena, wishing you many more cancer free years

Loren x

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Thank you Loren and hope all goes well for you too. xx

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Zena, I’m new to this site and your news has really inspired me, so very pleased for you x Great news x

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Thank you. I've been very lucky and haven't had to put any bad things on since I joined really.(which also makes me feel a bit guilty) I hope it shows there is hope for everyone because I'm nothing special. I hope all goes well for you. xx

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Absolutely wonderful news,long may it continue for you. This news gives many ladies a lot of optimism, so thank you for telling us. xx

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I just wish I knew why some go one way and others not. A magic wand would be useful. There's so many people I'd like to help. Let's hope the trial at least, helps ladies in the future. Best wishes, xxx

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Fantastic 💞

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Thank you. xx

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After all the sad news we've had lately, this is the post I needed to read!!! I love when women who have been through hell, emerge victorious, carrying buckets of water for the rest of us...your post gives us all hope that we too can make it through the flames. Thank you for sharing and for the inspiration. Long may you continue to be cancer free.

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Thank you so much. I'm still very upset for Lily-Anne and the others. They were my main informants and I relied on their advice as we all did. I miss them very much. I hope all is going well for you. xxx

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This is great news, LONG MAY IT CONTINUE!

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Thank you very much. I hope all is going well for you. xxx

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That is wonderful! So happy for you! 🤗

xx Gina

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Thank you so much Gina. I do hope all is well for you too. xxx

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Wonderful news and long may it continue for you Zena 🥂🍾❤️Xx Jane

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Thanks Jane. There are so many lovely ladies on this site that shouldn't be here and fighting their own battles. I've been so lucky.

Hope you are feeling well. xxx

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I’m really well thank you, I reach my 5 year anniversary in August. We are very lucky girls. Keep well lovely ❤️Xx Jane

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Wish you all the best Jane. We certainly are very lucky. xxx

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That's perfect, Zena. I don't think there are any guarantees but hopefully you won't be bothered ever again by this disease monster. Xx. Maus

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Fingers crossed Maus. My oncologist told me she's had CA125's in the 30,000's. I didn't know it could go that high. In fact, it was only when I joined here I knew anything about high CA125 tests. I've never been told what my original reading was.

I hope you are feeling well. xxx

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Mine was in the 4000s. I'm tired and prone to minor infections but fine otherwise. Ca125 still slooowly going down (last reading at 77). Maybe if I turn 100, I'll see it hit normal range. ;) Stay well. xx

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You'll get there Maus xxx

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That’s great to hear! Congratulations!

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Thanks Lyndy. I hope you are doing well. xxx

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That’s fantastic news Zena, you must be so happy.

I’m just over 2 years so I’m really hoping to aspire to follow in your footsteps....

Keep enjoying life

Marian xx

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Thanks Marian, I hope you also get many more years disease free. I still worry every time I go for an appointment that it's come back though. I doubt I'll ever feel completely confident but I'm sure there are plenty of other things I could worry about that would be much worse.

I really do enjoy my life now. I'm off to India in a few weeks and have just come back from Poland. I've started some more classes. I've hardly got any free time and have a very full diary. What a lucky lady I am.

I hope you are keeping well. xxx

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Fantastic news! Pam x

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Thanks Pam, I hope you are keeping well. xxx

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Yes thank you I have been on a part inhibitor for the last 7months with minimal side effects!

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It mean something when we say minimal side effects are good. lol. xx

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Fabulous news, I too am BRCA2 + too and having a ‘wobble’ day today....your lovely post gives me a reason to smile xx

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We all have the odd wobble day, it's only natural. I once took a packed bag to the hospital appointment because I was convinced they were going to keep me in and it turned out everything was fine. I try to bank my worry time now for when I really need it.

As the time goes on you'll feel better but it's hard to forget because everywhere you look there's talk of cancer either in adverts or TV programmes. It will soften over time but I don't think it will ever leave us completely.

Best of wishes for the future and I hope you are feeling better today. xxx

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Hi Zena. That's great news. My mum was diagnosed 3C in Dec 2013. Although she's had three lots of chemo she's stable at the moment. Long may it last!! Jane XXX :-)

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Thanks Jane and great news for your mum too. Your mum is just 6 months behind me with the same stage. I was diagnosed on the longest day and it certainly felt like that at the time. She's doing well and as you say, Long may it last. xxx

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Hi Zena. I bet it did feel like the longest day for you. :-( Mum got her official diagnosis on Christmas Eve 2013 - worst Christmas present ever!! Mum has had three lots of chemo - Carbo/Taxol then Caelyx then Carbo/Taxol again and she's been steady since July 2017. Yay, long may it last! XXXX

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How horrible for Christmas Jane. I bet it will be a reminder every Christmas now. I'm glad all is going well now and wish her all the very best for the future. xxx

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Yes, a very surreal Christmas! She had the Carbo/Taxol either side of the debulking surgery in 2014. At her first three month check in Oct 14 things looked great and mum was so thrilled she booked tickets for her, my sister and I to go and see Gypsy in London the following June. Then on 6 January 2015 she had the awful news that the OC had recurred. It was such a blow. On 8 Jan it was my twin brother's and my 50th birthday. A very surreal birthday for both of us! She's doing pretty well now though. Just getting old and creaking a bit!! But we saw Gypsy, despite mum thinking it would not happen, and thoroughly enjoyed it and mum has seen many shows since. My sister is amazing and keeps booking shows for her and I think it helps her to keep going!! Mothers' Day pressie from my sister was tickets to see Fiddler on the Roof in London!! Sending best wishes. Jane xx

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I'm really pleased she's getting on with things. I've booked holidays a year in advance and shows and all sorts of things. I buy clothes that at one time I wouldn't do because I didn't think I'd be wearing them. It all helps things seem normal.

Pass on my best wishes and long may it last. xx

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Well done for booking lots of things in advance Zena. My mum has always been positive and is a strong person. The news of the recurrence hit her hard but once she'd picked herself up again and got on with the next lot of chemo, she was so positive and, like you, bought shoes and clothes and all sorts, which was great. She booked holidays too. She is a member of a gardening club and she has holidays with them which she really enjoys as they involve trips to gardens. Actually, it was me who felt a bit wary of her buying things and booking trips!! What a pessimist eh!!

As Jenny said, don't leave this forum! I'm sure there must be many good news stories for women who aren't on this forum but it is great to hear positive stories.

Best wishes. Jane XX

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Thanks Jane,

You could suggest to your mum that she joins her local U3A group. I did and now do so many things with them I've hardly got time to breath. I'm doing badminton, guitar, Spanish, Bobbin Lace Making, bird watching, local history, walking group. In fact there's so much I can't manage everything. We have 47 different groups as well as our monthly meetings where they arrange speakers and trips. It's great.

Best wishes, Zena xx

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So lovely the hear this news. Please don't feel tempted to leave this forum thinking that it is no longer relevant to you. We need regular helpings of this sort of good news.

Jenny

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Thanks Jenny, I'm staying around as long as I can. I don't post much because I haven't got anything to say and I'm not even much of a help with the questions as I haven't been through some of the awful things that are happening to others. I put my oar in every now and again and read what others say and I must admit I get in a muddle with everyone so like to be reminded every now and again.

Hope all is going well for you. xxx

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Hip Hip Hooray! I am really happy for you. Good news is great news!

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Thank you so much xxx

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Brilliant news Zena you give us all hope.

Joy xx

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Thank you Joy. I just wish I could give everyone more. xxx

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Hi Zena. Such good news.

I know 2 women who've survived this disease for 20-30 years with no recurrence. One, BRCA neg, was given 6 months to live. After chemo, her OC never returned. The other, BRCA pos, had breast cancer, then OC, hers never returned either. I read somewhere that if you're BRCA pos, you have more chance of OC but also more chance of surviving it.

Wishing you many more ca125's at 8.

Pauline

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Thank you Pauline, that could be it as I'm BRCA2. Luckily, I'm the only one in my family too. Everyone else has come back negative which was a big relief.

How are you getting on? xxx

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I am remarkably well, thank you. I feel I'm in a strange position at the moment: I was fortunate enough to get onto an indefinite avastin trial - that was > 5 years ago. The avastin began as a trial along with 6 months of carbo/caelyx for 2nd line. After the completion of the chemo, avastin continued as maintenance. It has worked amazingly well for me; very few side effects. But as you say, it's a worry every time the appointments are due (3-weekly). A few years back I was told that I was the last person at the hospital I attend, remaining on that particular trial. Much later, I was told, that they THOUGHT I was the last remaining in Australia. I didn't take that too seriously as they only "thought" that. Then a month or two ago, I was told I was the last remaining on my trial - in the world! I'm still in shock: while I'm amazed and happy, I also feel something like when you hear of the last remaining soldier from a certain historical battle and you can't help but think of the morbid inevitability that goes with this achievement. I also wonder about the hundreds no longer on the trial - was it the side effects that caused them to drop out or was it progression?! Because there's now only me, the trial is being completed but I'm still to be suppled with avastin.

I'm very happy to have been so helpful to the drug company and for women in the future but perhaps I'm just a statistic that makes no difference really to the overall average. But I hope my tumour is being analysed to see how it may differ from the hundreds of others.

Having told you all this, my ca125 has been, over time, very gradually trending upwards. Also my urine more frequently over time, needs to be a 24 hour collection, instead of the small sample and it's also difficult to keep my blood pressure within bounds - I need medication for that.

Like you, I've barely taken medication throughout my life - always been healthy. So it was a major shock when diagnosed at 3c in Nov 2011. I had my children late so I wonder if that was the cause, as OC is known as the nun's disease, as nuns don't have children, which makes them more susceptible to OC.

It's late here, I'm tired and I didn't intend writing about this. Apologies if I've gone on too much.

I wish you the very best for the future. Pauline.

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Oh Pauline, you're still here, alive and doing well. I had my children late in life as well and had pre cancer cells after the birth of my first child. We'll never really know the outcome of any of this because they don't tell us the results of the trials we're on. I do it to help others. It was mentioned to me that many on the same trial as me had died. Didn't cheer me up much. I think it was supposed to make me feel better that I was still here. It didn't.

We just have to keep going and doing the best we can.

I've been out to lunch today with some friends and my friends husband has just come back from Australia.He didn't want to come home he enjoyed it so much. If I can find the money (which is doubtful) my husband and I would love to come over.

Here's to many more years to us all.

Best wishes, Love Zena xx

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Hi Zena, I am so very pleased to hear your news. You are so fortunate and I truly wish you well. Long may it continue, but remember any change in anything get to your Gp. Sending lots of love 💕 hugs 🤗 and positive thoughts. Xxx

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Thank you very much. I find now that every little thing I get is now something major in my mind where before I would brush it off. Hopefully, this attitude will change in time. I didn't even take a pill before all this. How things change! lol xxx

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Great news Zena! Thank you you for sharing! Long may it continue! 💕💕💕💕 xx Peggy

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Thanks very much Peggy. I hope all is going well your end. xxx

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Fantastic news xx

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Thanks you xx

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So happy for you Zena--Its so nice that you don't take it for granted either. Enjoy every day, year and beyond. oxoxoxo

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Thank you. How are you getting on? xx

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I am doing OK Zena but my ca125 is on the rise. Scan on April 12th. I am curiously calm but I think I have resigned myself to a relapse coming and hoping not (better than thinking the other way around for me! I would love my ca125 to sit still but it never seems to! Doesn't take away from the joy I feel for you!!! oxox

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Good luck with the results. I was told that the CA125 can vary daily which is strange as mine has been exactly the same every time it's been checked. Let's hope your results turn out to be not as bad as they might be. Be thinking of you. xx

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So happy for you! May you enjoy years and years of health and happiness!!!

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Thank you so much. I wish the best for you too. xx

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Hi Zena- you indeed are one of the lucky ones. My onc said there a 85% chance of reoccurrence in the first two years post chemo. Then it drops to 15% with the higher likelihood of reoccurrence in year three. If you make it to the five year mark then any new neoplasm is considered a new cancer. Congratulations!!!

I am at the 2.5 mark and ca125 remains steady at 5-6. I also think

Of it everyday.

Thank you for sharing your story. It gives hope. What chemo drugs were you on and did you have radiation?

Xx Carol

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Hi Carol,

I was on Pachyarel and Carboplaton. I had this weekly for 18 weeks. It was a trial to take it weekly rather than 3 weekly. I didn't have radiation. I had the op before starting on the chemo. I asked if they'd do a tummy tuck at the same time lol but they said they couldn't. Pity cos I still have a big belly.

Your CA125 is better than mine, that's great.

Best wishes, Zena xx

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Hi Zenaj

Fantastic news. Keep it up! Gwen x

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Will do my best Gwen. Thanks xx

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That’s wonderful! Thank you for sharing your great news with us! God bless!

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Thank you All the best to you as well. xxx

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Brilliant, happy news. Keep it up.

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Thank you, I certainly will. xx

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That’s great news but I can understand you cannot put it completely out of your mind.

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What great news, I’m so glad for you. X

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Thank you xx

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So pleased for your Zena, it’s really great to hear you are doing so well and filling you life with lots of nice things! Keep well. Jo xx

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