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Didn't quite clear that last hurdle (Recap of Lost Posts, Topic Created by evolo58 on Nov 01, 2018)

cmb Member Posts: 749 **

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.


Nov 01, 2018 - 2:44 pm

CT-125s are 770 now. They were NEVER that high in the past. 

Time for another CT scan and a session of doctor-go-round.

Problem is, except for constipation which is clearing up, I don't feel anything out of sorts. 

This is such an insane disease.



Nov 01, 2018 - 3:04 pm

We're with you!

Hang in there.  Keep us posted.



Nov 01, 2018 - 3:32 pm

Oh, crap

Oh crappity crap crap. Whatever else it portends for your physiscal self, it's not good for the mental health. I pray for all of us each day, but you're definitely getting some extra ones. Let us know what we can do to help, okay? Hugs, B



Nov 01, 2018 - 4:08 pm

Ugh, I'm sorry. Hope it's

Ugh, I'm sorry. Hope it's nothing serious, but I know the worst is the worrying. I'll be thinking of you.



Nov 01, 2018 - 6:21 pm

I'm praying that it's a just

I'm praying that it's a just a false positive. I hope your scan is clear. 



Nov 01, 2018 - 7:22 pm

dear evolo, I am so sorry to

dear evolo, I am so sorry to hear this.  Please let us know what the plan is.  Prayers for all the warriors.



Nov 01, 2018 - 11:32 pm

Dear evolo, I am so sorry to

Dear evolo, I am so sorry to hear this. These tests are scary. It encourages me to hear that you are feeling well. I hope the CT Scan clears things up. I am thinking of you.



Nov 02, 2018 - 12:19 am

I am STILL trying to find

Someone whose levels went up THAT high in three months and isn't crawling on the floor in pain. I have read some pretty awful stories, and their CA-125s weren't nearly that high. I know that the exact number doesn't indicate much of anything. Two women could have wildly-different CA-125s, and the lower one might actually be in more trouble. But this is bizarre ... again.

And I have NEVER read of someone's symptoms getting BETTER instead of worse.

I wasn't even nearly this high at diagnosis ... only 121. 



Nov 02, 2018 - 2:46 am

It doesn't make sense,

It doesn't make sense, especially since yours wasn't (relatively) that high at diagnosis. Mine was 123 at diagnosis, largely due to my huge fibroids. I've had two recurrences and it's never gone above 12, so I know it's not an indicator for my particular brand(s) of cancer. I'm thinking yours must be affected by something else as well, hopefully benign. 



Nov 02, 2018 - 9:19 am

Every time someone thinks

Every time someone thinks they are having a recurrence my mind refuses to agree with their gut and tries to think that it could be something else. Please God, let it be something else! Setbacks always seem to take another piece out of my own hopes which is probably why people sharing their good news is so uplifting. That CA-125 is so unpredictable as to what it means, especially since its way higher than what you had at diagnosis that I'm holding out hope that it's going to mean something other than the worst. Please God!



Nov 02, 2018 - 4:00 am

Maybe it’s a lab mistake

It happens. We’re all with you. CA 125 is not indicater for me. We don’t even do it any more. 



Nov 02, 2018 - 7:31 am

Same for me CQ - not a good

Same for me CQ - not a good indicator for me either, however, I play the game.  I had always been told I would have pain, bloating, bleeding - SOMETHING.  But then I come and read all of your stories here and think I am missing something.  I play the CA125 game, I suspect they do it for me because I call and ask for the blood draw order to be sent in too.  I wish there was a better way.  Prayers for all of you.



Nov 02, 2018 - 11:12 am

Add me

to the list of those hoping there is an innocent explanation for your numbers. 



Nov 02, 2018 - 7:16 pm

Well, here was my breakdown at the time

I was having a NASTY bowel disorder ... I won't go into detail. But I think the straining hurt my pelvic floor, I was in pain at various points throughout the day and I kept wanting to go even after I went. This was going on for about a week or two before. With more water (I was absolutely not drinking enough!) an extra stool softener, and more fiber, it's subsisded quite a bit. I don't even feel it most of the day now (and when I do, the pain is very, very minor and quick), and my bathroom habits are normal. I KNOW that IBS and assorted bowel inflammation can wreak havoc with the CA-125s. 

I had extra radiation with the diagnostic mammo the Thursday before. Sometimes, radiology scans can affect the CA-125. If it did affect it, though, it didn't affect it that much.

For all I know, because of the dehydration, the kidney stones were threatening to act up again.

And I was under far, far more stress than normal, and not just because of that appointment. All Hell broke loose two weeks before my scan, and I never fully recovered from it before the appointment.

There are stories of ladies with 1000+ CA-125s post-treatment who turned out to have good CT scans ... or at least not cancer. Please, please let me be one of them.

It's pretty bad when I'm praying, "Just not cancer. My bowel could be inflamed, adhesions could be wreaking havoc, my appendix could be ready to come out. Fine. Snip out that appendix, fix that bowel, let me live with the adhesions. But JUST NOT CANCER!"



Nov 02, 2018 - 5:56 pm

I totally get that evolo. I

I totally get that evolo. I got laid off a couple weeks ago ... which completely sucks ... and I still thought: still beats the hell out of cancer recurrence. It totally changes one's perspective. 



Nov 02, 2018 - 10:09 pm

It does, Lisa,

but still...........