What is SHARE 40?

healthunlocked.com/share-ov...

Good Evening Warriors,

I've just read a post by a concerned sufferer on that page whose CA125 levels aren't dropping the way she would like. I'm really cross by the answer offered by another member.

Maybe I'm just in a bad mood, but I'm sick of the emphasis being put on this number when some of us are worried sick that we're not 'average'.

Have a look..

Debs xxx

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14 Replies

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  • Looks like an American site, Debs. Put it out of your mind - we're a whole lot more supportive over here on MyOvacome 😜

    Happy New Year to you xxx

  • As a US citizen, I totally agree with you, Yoshbosh. I love this site because you ladies (and gents) are a cheerier bunch than those on an American site I am on. Much more supportive also. With a last name of Lancaster, I surely feel more at home here with my distant kin. 😁

  • I agree with Yoshbosh, some of the sites are way over the top and perhaps that is why we have more american ladies coming on here. We are a more rational bunch no offence meant to anyone. The numbers I dont know about because on my recurrence mine was low but my ct scan showed movement so I am not a reliable 125 student. Dollysmum we are all different, the averages are for those researchers who work out the stats and they are way out of date as well. None of us here are qualified to give medical opinions on others posts. Tomorrow is a new year a new beginning so make the days count, this is my hope for 2017

  • I agree with ca125. I am here in the us so we don't have a lot. I have read that a125 is not that reliable and I really got hung up on them.

  • Hi Sally, unfortunately we do get a little OCD over the numbers. I think because in lieu of symptoms it's all we have to chart our progress. I never had any symptoms and am a stage 3b. And my ca125 was only 45 at diagnosis. 6 at end of chemo. So I stress a little even at the same time I am telling myself to chill. By the way, I hail from Charleston, SC. Happy New Year!

  • Same thing you

  • I hate gin lol

    I've never heard of it and I've been researching the last four years!

    LA xx

  • Hi Debs

    I am a passionate believer in free speech. If you post on a public forum then some of what you may get back may not be nice. Most who answer are not medics and can only give an opinion based on their own experience. It may disappointing but I think (my opinion obviously) that you have to expect posts that you may not agree with. That reply may have been posted in all faith that they think that they have helped.

    I am actually not sure what I think of the reply.

    Regards Fay

  • Hi Fay,

    Free speech used responsibly would be my preference. But each to their own.

    Debs

  • I agree that far too much emphasis is on numbers and statistics. We are all individuals.My CA125 was 2002 at time of diagnosis-stage1c with rupture (clear cell)-down to 65 after surgery -15 after 1st chemo and then hovering around 8 for a year after which I chose not to have it monitored.

    I took on board what oncologists believe that it causes unnecessary stress and that we should go by clinical picture.

    I also made it clear to the team treating me never to quote statistics or even think about talking survival rates with me.

    Take care x

  • Thank you

  • I read your reply on the share 40 site (good for you) and your reply to her lost on this site. Well done. What is the 80/20 rule anyway. Never heard of it. Best advice I ever got is to ignore statistics. And CA 125 can be a finicky test.

  • I was told 80/20 is 80 percent will tolerate chemo and 20 percent will not

  • No doctor should give you those stats, they dont know, its the same as asking how long is a piece of string, it can be any length. We are all different in our illness and reactions to drugs. A baseline for one of us could be different to the next person. All the best, but think of how you are doing and how you feel. All scans and bloods not done any more routinely in Ireland. Its how you feel and if you are symptomatic

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