CA-125, Does it really mean anything? (Recap of Lost Posts, Topic Created by LadyMox on Oct 31, 2018

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

LadyMox

Oct 31, 2018 - 8:31 am

Since I am anxious about my next scan in a few weeks I have been getting paraniod that my CA-125 is responding so well that it don't mean anything; Especailly siince I haven't had surgery yet. Of those who were told thier CA-125 what kind of levels did you have and did they actully mean anything for you? My doctor said my large tumor is almost assurly shrinking because of my drop in CA125, but of course I don't know.

1700- At the ER when I had septis and fluid in my belly

1100- The day I got my fluid drained from my belly (which thankfully didn't have maligiant cells). I know the fluid itself can cause a raised CA-125

120.9- My baseline from the day I started chemo

36- The day of 2nd chemo

18.8- The day of 3rd chemo

I have one more chemo and then a scan and the scan will be the proof in the pudding so to speak. I just wonder how can my CA125 be so low when they haven't even done surgery yet? When I likley have a large tumor near my ovary? Even if it shrunk 75% that would still make a inch sized tumor.

 

MAbound

Oct 31, 2018 - 9:25 am

Sometimes

The problem with the CA-125 is that it's not an absolute, reliable indicator for every person,. It is for some of us and isn't for others and can be affected by things other than cancer. It seems to be an indicator of progress for you, though.

I think we all can't wait to see you get to where you need to be from your chemo to get some more definitive answers for where you stand with this cancer; not having that is making you think the worst and a person can only endure that kind of stress for so long. You are making progess, but not knowing where the end of the tunnel is when you are in the dark is tortuous. I think we are all axious for answers with you.

 

cmb

Oct 31, 2018 - 11:07 am

Another Stage IV Survivor

You may want to read the profile of apoohneicie at https://csn.cancer.org/user/232818. She was diagnosed just before turning 31 with stage IV uterine carcinosarcoma (MMMT). A grade 3 cancer, survival prospects for Stage IV patients with this cancer have historically been very grim.

However, she persevered with the treatment her doctors prescribed. And while she doesn't post to this site or the MMMT Yahoo site any longer, she is still alive at 42 and doing well. You can see her earlier posts on Twitter at https://twitter.com/apoohneicie and her later posts at https://twitter.com/morphisa.

While she is an exception to usual outcome for Stage IV MMMT patients, she does prove that some people do exceed expectations, even for rare and aggressive, late stage cancers. Perhaps in the future doctors will learn why certain individuals beat the odds as it may be tied to genetics or particular sensitivity to certain treatments. In April's case, it looks like Avastin may have been particularly well suited for her. In the meantime, her long remission helps the rest of us remain hopeful in our cases.

It certainly seems as though your chemo treatments have been working and I hope this is confirmed once you have surgery. As MAbound said, we are all following your situation closely and wishing for the best possible outcome.

 

LadyMox

Oct 31, 2018 - 11:27 am

I never knew anyone had thier

I never knew anyone had thier tumors shrink from Avastin, wow. I have seen a few rare cases where Immunotherpy in a rare few cases created complete and sustained remissions. I am hoping that they can home in on that reaction in the coming years to reach more people.

 

LadyMox

Nov 02, 2018 - 11:08 am

What amazes me (on top of the

What amazes me (on top of the fact she survived)  that apprently she hasen't had a reoccurance after all these years when it totally filled her abdomen; She was as high stage 4 as one could be. This gives me some hope that if they manage to get me clean that maybe I could be very lucky and not reoccur or have it take so long that there is time for new treatments to come out.

 

MAbound

Nov 02, 2018 - 1:10 pm

That's why we don't want you

That's why we don't want you to give in to those dark feelings. We all have high hopes for you even if you can't be cured. Living with the beast lurking in the background is doable and it's worth the effort one puts into it. All of us really have to do that because uncertainty never truly goes away and we all have to be mentally prepared for needing to re-engage in battle.

 

evolo58

Nov 02, 2018 - 4:57 pm

I have even read of ladies with recurrences

Who have passed the five- and ten-year mark. It's not common. I won't sugar-coat that. But it CAN happen, and don't let ANY doctor tell you otherwise.

Even though I was diagnosed with UPSC, that lady's story inspired me as well. Let's face it ... the prognosis is scary for ANY of the Type 2s. 

 

EZLiving66

Oct 31, 2018 - 11:09 am

Mine was 14 before surgery,

Mine was 14 before surgery, dropped to 11 and then went back to 14 when I was NED. After that they quit doing it saying it didn't work for ME. But it sounds like it's a good indicator for you and it's very promising that it's dropping like that!!

Love,

Eldri 

 

LisaPizza

Oct 31, 2018 - 3:36 pm

My ca 125 is like yours, it

My ca 125 is like yours, it was never elevated and fluctuates, but surprisingly my gyn onc keeps ordering  it. It was actually elevated a bit once (64), but that was 15 days post op, and abdominal surgery itself can cause an elevation.

Now that I look at them all, it was 15-17 before surgery and after my first chemo,  and then has been 9-11 ever since (6 times), so I  guess it did drop. I think it goes down with menopause? I saw an article about ovarian cancer testing that said for postmenopausal women with no bleeding, it should be =<20. It also said it goes up during uterine bleeding, which I had lots of pre-op and light post-op.

 

LisaPizza

Oct 31, 2018 - 3:40 pm

LadyMox, I think with that

LadyMox, I think with that kind of drop, I agree totally with your oncologist.

One advantage of having chemo prior to surgery is being able to tell that your cancer is responsive. 

If you have only post op adjuvant chemo for preventive purposes only (no residual disease after surgery), you don't know whether it even did any good, you just hope.

 

ConnieSW

Oct 31, 2018 - 4:47 pm

good point

i never thought of that 

 

evolo58

Nov 02, 2018 - 5:01 pm

Neoadjuvant

has both good and bad points.

On the one hand, it can get the party started before your surgery ... work on shrinking tumors and checking results.

On the other, you will never have a proper staging, since the chemo probably shrank the tumor at least a little. My pathology claims I was Stage 1A, even though it went to the omentum (good question why ... I still consider myself staged 4B because of that). From what I can discern, it never went past 50% of the lining, even WITH the chemo, and might have been a Stage 1A all along, but I will never know that. That's why I shrug when people ask me about my pathology report.

Don't be terribly surprrised, though, if the doctor suggests an extra chemo or two post-surgery. In adjuvant chemo, you usually get four to six. 

 

janaes

Oct 31, 2018 - 6:05 pm

The CA 125 does seem to be a

The CA 125 does seem to be a good marker for you. Im glad you had yours checked before starting treatment.  Thats one problem with my situation. Mine wasnt checked before chemo.  I didnt even know about that CA 125 until i started chemo.  I still wish i had that number because even though my number has remained low i dont know if mine was low before so it doesnt tell me much. I will be doing a catscan pretty soon and im a bit nervous too. Im hoping im still NED wich was the case almost a year and a half ago.

 

Armywife

Nov 02, 2018 - 12:39 pm

CA-125

Mine was not checked before surgery.  It was 14 between surgery and chemo, and 15 after 3 chemos.  it hasn't been checked since.

 

evolo58

Nov 02, 2018 - 5:03 pm

There was a report

Suggesting that in some stages, women SHOULDN'T be getting regular CA-125s. since so much can skew the results, and their waiting a few months before symptoms and  treatment didn't seem to affect their survival rate. However, it was one single report (no follow-ups, as far as I know), and I would think that it would not apply to anyone at Stage 1 or 2. 

 

Jairoldi

Nov 02, 2018 - 1:19 pm

Mine was also not checked before surgery

My CA 125 after surgery was 18 and went down incrementally from there.  My lowest was 5 and last was 6.  They are still checking it and I'm 1.5 years post-surgery which was May 1, 2017.

 From 5/24/2017-9/12/2018

8

14

10

8

5

8

6

 

LadyMox

Nov 09, 2018 - 10:41 am

Yesterday on the 4th chemo

Yesterday on the 4th chemo day my CA125 was 20. That's 1.2 higher then last time. I'm trying to not be worried since it's pretty close and it's basically stable. 20 is in the normal range and I haven't had surgery yet.

I have my CTscan scheduled for Nov 23rd. My doctor said she would call me with the results the next day but given that's a Saturday and a Holiday weekend I'm not expecting the results till Monday. She well decide if she likes what she sees will schedule surgery otherwise probably more chemo. It's going to make a tense weekend.

 

LisaPizza

Nov 09, 2018 - 12:58 pm

Aw, that timing SUCKS. I hope

Aw, that timing SUCKS. I hope you get a break with getting the results right away nonetheless. I hope it's GOOD and you're moving on to your surgery.

 

zsazsa1

Nov 09, 2018 - 2:53 pm

I'm hoping for you Lady that

I'm hoping for you Lady that it's time for surgery.

I think that CA-125 may be a valid marker for me.  Mine had been very low years ago, before I got this.  Was I think 35 or 36 at diagnosis.  Went up to 48 about 8 days after surger (due to post-op inflammation), dropped to 43 by two weeks after surgery.  Now, two weeks after first chemo, and about 5 weeks after surgery, it was 24.  I'm hoping to see it go down more - I'll be relieved if it gets down to single digits.

 

zsazsa1

Nov 09, 2018 - 3:33 pm

For you, Lady, I bet it is a

For you, Lady, I bet it is a valid marker, because it has dropped so low with the chemo, more and more with each cycle.  But I don't think you will know for sure until a couple of months after surgery, after the post-op inflammation reaction bump up is gone.

 

pinky104

Nov 10, 2018 - 1:29 am

CA-125 Levels

When I first had my stage IVb UPSC in 2010, my CA-125 was in the low 90's (I think 92 or maybe 94).  It came down to the 7's and eventually the 6's in the following years.  In 2016, it went up to 9 and I got worried, but my GYN/onc.'s nurse practitioner, who saw me, wasn't worried.  I was told that a reading under 30 was normal.  Then in Feb., 2017, it went up to 14, and I got even more worried.  After having a hemoccult test at my PCP's office, and blood being found in one of the three smears I'd provided, I had to schedule a colonoscopy.  That took about 3 weeks to schedule.  Cancer was not found in the colon, but wrapped around the outside of the ascending colon (and it was in several more areas which didn't show in the colonoscopy).  The camera for the scope showed a picture of it showing through the wall of the colon.  I then had to have a CT scan and a PET  scan after seeing my oncologist in one hospital (where I'd had my chemo) and then was rushed into my GYN/onc's hospital for surgery less than a week later.  I didn't have a CA-125 drawn at that point, but about two weeks after the surgery, my CA-125 was at 129.  That was quite a large jump, from 14 to 129 (or possibly even a little higher before my surgery) in a little short of two month's time.  I'm now at 15 and am being pronounced NED still (my chemo ended in Sept. '17 and I was found to be NED then).  It bothers me to know that it was growing so quickly before when it was at a lower number than I'm at now, but my CT scan in July of this year was normal, so hopefully, that means something.  I asked my GYN/onc. when I should start to worry if my CA-125 starts going up again.  His answer was that I should see him if it's 20 or above.  He knows the CA-125 is an accurate test for me, and I'm sure his answer was based upon the fact that even with stage IVb, my CA-125 results were nowhere near as high as some people's are.  I've heard of a case or two on here in past years where it went into the low thousands.

 

BluebirdOne

Nov 10, 2018 - 5:10 pm

CA125

My CA125  was 17 when tested  7/24/18 pre-surgery, pre-chemo. I am a 1a but I had a fairly large tumor.  They have not done any other CA125 tests since then and I am not scheduled to have one with my next blood work. I can only speak to my own experience but they have not mentioned it as something they rely upon for me at this time.