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CA-125 levels

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

This is something I've wanted to ask about for a while, but was too superstitious to put my concerns out there until I had results from a CT scan and heard from both of my oncologists that I should not be worried. My CA-125 levels have been quite high since before my hysterectomy. I'm still too superstitious to put the numbers here, but it's never been below 500, and has never been over 1000. It went down by about 200 points after my surgery, but then went back up a bit with the tests taken before my 2nd and 3rd rounds of chemo.

Both of my oncologists have told me, as most people here know, that it's an unreliable measure for endometrial cancer because various things can affect the level for any individual at any given time. (In fact, my gyn onc doesn't do the test at all until after the full course of chemo is completed; it was my medical onc who ordered the tests with each blood draw before chemo.) They've both also told me that they don't consider my numbers to be outrageously high (they've seen much higher), and that in any case, they go by what the scans say rather than the blood test results, and my scans show that everything is stable, with no metastases.

Still, I can't help but worry. Why order the test at all if you truly think it is meaningless? It also bothers me that neither doctor brought the test results up with me. I only found that they had even been testing for it after I got access to my medical records via my health system's website. (The test result printouts I was given on chemo days did not include the CA-125 results.) It's hard not to worry that they were hiding something.

Oncologists are aware of patients' anxiety about this test and even refer to it as a disorder. (That bothers me quite a bit. If it's a totally useless measure, why administer the test at all?) There is an interesting research article on the subject here https://www.ncbi.nlm.nih.gov/pubmed/22119973 .

Anyway, I am interested in hearing from others who have had similarly high levels before, during, or after chemotherapy. What have your doctors told you about how to interpret/use/live with the results? Thanks very much.

rcdeman
Posts: 256
Joined: Aug 2016

When I asked my mom's gyn/onc and med/onc about CA-125 testing, they just brushed it off. My mom has never had her CA-125 tested because they think it isn't necessary. I know that that CA-125 may be a good marker for some people but not all. Even so, I think I would feel more comfortable if they tested her nonetheless just to create a baseline. They did mention that this marker is only useful for about 50% of women who are diagnosed with a gynecological cancer.

I'm afraid I don't know much more about CA-125 levels to give you any additional information or advice, sorry. :/

Love,
Rebecca

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

Mine was like 8 and I had full blown endometrial cancer so my oncologist said it's not a marker for me and hasn't done it for over nine months.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1551
Joined: Jun 2015

Mine was around 22 before surgery - still considered in the normal range.... Then, jumped to 90 something during chemo. Go figure.  My medical oncologist was a bit concerned but my GYN ONC wasn't at all. My last one was 9.  My medical oncologist still does the test every 3 months along with other blood work.  He also wants to do CT scans every 3 months for the first two years, which I refuse to do. So, it sure seems like our doctors all have their own opinions on how much monitoring is required. My two guys don't agree.

Love and Hugs,

Cindi

janaes
Posts: 772
Joined: May 2016

boy i hate that CA 125 marker.  My medical oncologist lives by it and in my opinion doesnt seem to understand that its not the only thing to go by.  I wish i had the answers to all this craziness because i want more answers too. 

Beccabtown i wish you peace as you you try ti sort through this stuff.

With love, Janae

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

The CA 125 was not a good test for me.  I started before surgery and it was 15 after surgery it went up but then came down after each chemo treatment.  During the last five years it stays around 13-15.  I have a report about understanding CA 125 Levels A Guide for Ovarian Cancer Patients from the Foundation for Women's Cancer Bynecologic Cancer.  It helps explain what the test is and how to read it.  I am sure you can google the name and it will come up.   foundationforwomenscancer.org   -  This is the web site.  The test works for some and not for others.  Praying for you and hope this helps. trish

 

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Mine was 8 before my hysterectomy, 6 during chemo, and settled at 7 after treatment.  My gyn/onc doesn't feel it's a good marker, and I haven't had another one since last March.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

As I understand it my C-125 was always in the normal range, so it is not a great marker.  Still, my cancer had been an agressive one and so they want all the markers and I am required to have the C-125 test yearly.  It's expensive compared to other bloodwork so I wish I didn't have to have it done.  It's been 7 years since my cancer treatment and NED.  It had been at "7" for all those years after treatment and recently became 8, which freaked me out, but they weren't concerned.  I think they go by abrupt pattern changes, and if this occurs then they go to the scans, etc.  My surgeon said they go by how you feel, C-125 for any big changes, and then by CT, and if needed for further clarification, Pet Scans. 

Hope this helps!

pinky104
Posts: 574
Joined: Feb 2013

Mine was accurate for me, but it was only in the low 90's when I had stage IVb UPSC, the highest stage there is.  After surgery and chemo, it was in the 7's for a few years, then 6's.  My last test came up a 9, and like you, I was convinced my cancer had come back.  I still wonder, as that test was done this summer. I'm at 6 years out.  I have to wonder if I'm being too lax with my diet or something. 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi Pinky104,

With just a point or two in differences, another thing to keep in mind might be the labs themselves.  The minor fluctuations might reflect changes in protocols, etc. with the labs.  I just know that at this point my drs are not concerned, and I do not feel like my cancer has returned (thank goodness!). 

Keep on keeping on  :0)

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am one of the odd ones as the CA 125 has been very accurate for me, until now.  If it's number started to rise the cancer cells were on the war path again.  My oncologist's would say that maybe it was inflamation somewhere, but it would turn out to be new growth And when it was lower there would be shrinkage. Now, with the Keytruda, there are no  guide life's as to how it reacts with this treatment.  After the first one it rose to 875 after the second it fell to 460 and has been slowly falling for the last two.

Lou Ann

bluehyacinth
Posts: 45
Joined: Feb 2016

The CA125 works great for me. I appreciate the marker and get it every 3 weeks with Keytruda along with a bunch of other blood tests so I can evaluate where I am at (I do a several other of other regiments as well). Apparently it often works well for UPSC being more like ovarian cancer and not that often for type 1 endo. 

With respect to Keytruda my oncologist who has/had many patients on Keytruda told me to expect the CA125 to go up after the first treatement and perhaps after the second because it creates a massive inflammatory reaction at onset thus the increase. Then it should start going down.  And sure enough mine also went up after the first and down after the second.  

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You are the first person that I have heard of the is also on Keytruda.  Good to hear that the CA 125 may still be accurat.  It always has been for me. I kind of figured that the rise in numbers after the first infusion was from inflamation from my immune system attacking the cancer cells.  It was coming down until last time when it rose again..  I have a lot of inflamation caused by my SI joint and possible some diverticulitis going on. The tumor cells hat I have in my neck has increased in size.  I am thinking that is a good thing,  hopefully my I,unexpected system is attacking it some more.

Are you having any side effects?  I feel so much better than I did on chemo and have so much more energy that I don't know if some of the things going on are side effects or just old age.  I sure hope this works for both of us.  It is certainly a more humane way to treat this disease.

Hugs and prayers, Lou Ann

bluehyacinth
Posts: 45
Joined: Feb 2016

Sry reply ended up at the bottom, no side effects as of yet, perhaps some fatigue the first couple of days after the shot, but I have a lot of other things going on. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I don't know what mine was before treatment, but during and after mine has always been in the teens 13-16, so I kind of doubt that it's a good marker for me.

janaes
Posts: 772
Joined: May 2016

wow soup i thought i was the only one who didnt know there number before treatment.  I was almost afraid to admit that.  I cant remember what my numbers have been during treatment but they have been good and steady i too dont think it is  a good marker for me either because no one knows what the number was before treatment. 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

So maybe some good(ish) news from the lab work that was done this week before my 5th round of chemo. My CA-125 hadn't been tested since August, before radiation and the 4th round of chemo (and a bad chest cold). This week it was down to 117. I know that sounds frighteningly high to some of you, but it's well below any of my previous results. I hope it's a sign that something is trending in the right direction in there. I won't be able to talk to either of my oncs about it until the end of the month.

My last chemo treatment will be on the 22nd, and I'm really starting to feel the anxiety of being "cut loose" from the structure of front-line treatment to wait and see what happens next. Actually, my doctor agreed to order a scan for the last week of December so I can have one more before my health insurance changes, so I will know something then about where I stand post-chemo. Someone suggested to me today that I should start planning some new hobbies to pursue in January.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1551
Joined: Jun 2015

Becca, First.... CONGRATS on getting to your last chemo on the 22nd. My last one was 12/21/15 so my one year anniversary is almost here.  Please celebrate this major milestone. I think you will allow yourself to relax once you get the results of your scan. It does get easier with every new checkup.

For the first time in years we are going to put up a Christmas tree and other decorations. Part of our celebration of life. I'm going forward with positive thoughts and full expectations of a cancer free life. I hope you can get yourself to that point sooner than later. I don't mean to minimize the worry, but life is just too short to be in constant fear. All of us learn to live with this beast in our own way. I'm not going to say that it isn't in the back of my mind because it is.... But, I choose to push those ugly thoughts away and have become pretty good at it.

I hope you have minimal side effects so that you can enjoy the holiday season.

Love and Hugs,

Cindi

Nellasing
Posts: 529
Joined: Oct 2016

Your CA-125 numbers being down is great and here you are at your last chemo!!!  YAY!!!  Mine was Sept. 21, 2016 so I have only had one check so far in Oct. and my 2nd one is coming up Dec. 21st.  I know very well what you mean when you say "feel the anxiety of being "cut loose" from the structure of front-line treatment to wait and see what happens next."  It feels very weird and you do feel a little lost, at least I did.  I hope you get to ring the "bell of hope" that is a nice little period at the end of your treatment and a way to mark and celebrate the moment.  Then as you said, you have a scan coming up - my Dr. doesn't believe in scans unless there is something going on- it sort of adds to my anxiety as my CA-125 was also not a factor so there seem to be nothing to watch except how I feel.  But life has a way of coming back on line- all the things you might have put off or put on hold come back into play and you pick up and move on one day at a time and suddenly you are back into the swing of things Wink

Prayers for you as you finish up and start moving on... (((HUGS)))

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Becca, what a nice 'gift' that last chemo will be for you.  As an FYI I had a follow up CT scan shortly after I ended my treatment as well.  I remember the anxiety of being 'cut loose' as you said.  There was comfort in seeing healthcare workers regularly and then - it was like jumping off a cliff.  Even when I went from quarterly to every six months follow-ups I felt that anxiety, and when I mentined that to my oncologist she said all I have to do is call and they would get me in to visit -which brought me comfort.  Please let us know when your treatment is complete.

P.S. - my last chemo was 12/19/12

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Thanks for all the kind words. I will certainly let you know when the final chemo is done. And congratulations to Cindi and NoTime for your upcoming anniversaries!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

What a great Christmas present.  I hope you do something special to celebrate.  We get so used to seeing our doctors , then all of a sudden, we are cut lose.  Kind of a withdrawal.  I know I had anxiety waiting for those three months to.go by after I finished front line treatment.  

Hugs and prayers, Lou Ann

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Becca, it seems that withdrawal after frontline is something most of us experience. I did, for sure. It's been almost six months now and life is finally back to "normal" (for me, that means cancer is not my main thought/concern). Keeping busy with family, work, my dogs, garden, etc. has certainly helped with that so I agree with your friends about getting a new hobby. The more you can re-focus your mind away from the cancer, the faster you'll start feeling like yourself again. Congrats on making it through treatment and may you be NED from here on out! 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i like the " withdrawal after frontline".  Well put and we should add it to our terminology because it's very real. I thought I was weird when it happened to me and didn't dare mention it because of what you might think about me. Seems like our chemo nurses should educate us that we might experience this and reassure us it's normal and will pass.  Think of all the poor people who go through it without us (I'm including all the other boards here) to tell them it'll be ok.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1551
Joined: Jun 2015

I think I am the anomoly in this cancer war.... I couldn't wait to finish everything and not have any doctor appointments.

When I went for my "next" 3 month check up last Monday, I asked when they start the two year clock. I was hoping it was right after surgery. But, she said it starts at the end of final treatments. Bummer. She laughed and said that most women panic when they shift from 3 month to 6 month check ups.  So, you ladies are right that the withdrawal for most is very real and very normal.

I have white coat hypertension and will look at any excuse not to go to the doctor. At least I did prior to cancer. Now, I am diligent about going to all appointments but I have to fight myself not to go back into that 'old me' routine of skipping checkups.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

You and me, Cindi!!  I was never so happy to be done with that place!  I hate going back even though I love my oncologist's PA who does my exams.  Just walking in there makes my heartbeat go from 78 to over 100.

I have my own home blood pressure cuff because my BP also goes sky-high when I walk into that office.  I did not like the chemo nurses and it was probably because of them not being able to use the port.  They had to find a vein and that took a lot of pokes - they wouldn't listen to me when I told them they were trying the wrong places.  Finally when they did listen, they got a vein right away, just not in the place they wanted it.  They also didn't take my infected port seriously and didn't want to refer me to the Wound Care Clinic.  

Love,

Eldri

Nellasing
Posts: 529
Joined: Oct 2016

That was such a BAD set of nurses and making things even more tense during such a stressful time is NOT OK!  Did you happen to report them?  The only reason I ask is that perhaps you can save a sister later if that happens again.  I HATED BEING POKED MORE THAN ONCE- it got so very painful I started to panic and that made it worse- SO glad when I got my port!!! 

I just had it flushed and I had a bad experience- the chemo nurses do it- I went to a different office because it was closer and this gal must not have been familiar with my type of port (smart port) because she grabbed my skin and pushed down hard- which still hurts me as my port area is tender- I think she was thinking there were tabs on the sides to hold down????  She ended up pulling my skin over so now when released the poke mark is below the port?!  It hurt and I had the lido cream on there but she pulled the skin up and over so it probably wasn't covered- it's been sore all week :'(  I will NOT go back there- I'll drive the extra miles.

(((HUGS)))

bluehyacinth
Posts: 45
Joined: Feb 2016

Immediate side effects not really, but I have not been on it long enough to form an opinion, but will report back when I know for sure whether it is working or not.

MAbound
Posts: 868
Joined: Jun 2016

I'm another one who didn't have a Ca-125 level before surgery. It was in the 70's post op, but that could be from all of the inflammation resulting from the surgery. It was in the normal range through chemo. I don't know yet if my oncologist measures it after treatment.

janaes
Posts: 772
Joined: May 2016

Becca I am so glad you will be done with treatment for christmas.  My first cancer I had I had to do two cycles of radiation with a month break in between.  I finished my first cycle on my birthday.  I still remember how important that was to me 20 plus years later.  I did not feel like doing any thing it was just good to have that mildstone on my birthday.  Withdral symtoms are real and its okay to have them.  I sure did. It takes time and thats okay.

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

The latest in my CA-125 saga: the first post-treatment test result was 7.6! I'm completely flabbergasted that it's possible for it to go so low after starting out so high. I have plenty of other symptoms that worry me on a daily basis, but this is one indication that something had an effect. 

The truth is that I think I'm more depressed than I've been since being diagnosed, but that is a topic for another thread. 

CheeseQueen57's picture
CheeseQueen57
Posts: 811
Joined: Feb 2016

Becca,

I felt the same way and I found seeing a counselor really helped me. 

MAbound
Posts: 868
Joined: Jun 2016

Dear Becca.... the thing about depression is that a lot of people don't realize that it is often caused by a neurological chemical imbalance and that there is no shame in that or seeking treatment for it. It is treatable. A psychiatrist rather than a psychologist or therapist would be the Dr. to see first to get this possibility checked out because he is a M.D. specialist that can diagnosis or rule out depression from underlying physiologic causes. Our bodies have been put through the wringer by all of the anxiety, surgery, and treatments we've undergone and it wouldn't surprise anyone if you've been under assault from high cortisol levels or hormones being out of wack leading to this. Even this time of year can be an issue if you are affected by Seasonal Affect Disorder and could benefit from light therapy. Don't think or put up with anyone poo-poohing how you are feeling. You don't need to tough out or endure feelings of depression. After all you've been through, you deserve the ability to savor coming out on the other side of treatment.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Becca, I'm sorry to hear that your depression isn't subsiding. Are you seeking professional assistance? This is not something you should be trying to fix alone.

Nellasing
Posts: 529
Joined: Oct 2016

So glad your CA125 came down- hang on to that as a WIN today! 

Sorry about the depression- I agree- get some help with it- our bodies have been through SO MUCH and those chemicals have really done a number on them- how could they not affect the brain?  Plus, we've gotten through a life and death experience but it still hovers over us and is tramatic in ways that we can't begin to understand.  Please go talk with someone- if you don't know where to go get with your primary care and ask for a referral.  You are not alone in this.   (((HUGS)))  Keep us posted- your journey could help others

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Thank you for all the suggestions and support. I think I will feel better once I can sort out the problems with my legs. Gabapentin has been helping with the pain but now I'm having weakness and unsteadiness. Talking to my doctor about it soon.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

That the Gabepentin is helping.  I hope you get answers for the other problems.  I always felt week and unsteady when I was dehydrated. I always have a problem with drinking enough. Low red blood cells can also cause anemia that makes you feel that way.  I love your new hair!!!

Hugs and prayers, Lou Ann

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Thank you, Lou Ann! Dehydration is a real possibility and one that I need to start dealing with today. I hadn't even thought about anemia. My potassium was very low when I had labs done last week. Still trying to sort that out. Leg weakness could be a side effect of gabapentin or a symptom of neuropathy or low potassium--so it's very confusing.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Bananas and apricots work wonders for low potassium 

Lou Ann

Kamushka
Posts: 22
Joined: Feb 2017

Following you down the rabbit hole....i am not a complainer but was advised to tell of all my symptoms which, in itself, was hard for me...but.when I was in my sessions and I would tell the uncaring chemo nurses I had once every three weeks they brushed me off....... but one suggested I take magnesium....didn't help me and after I told oncologist she lowered taxol and said put my feet and hands on ice during the great m ent, which helped.....ask you doctor about magnesium or B12.....and good luck....I notice I am unstable especially after chemo treatments...Didn't think of dehydration.....had last chemo thank goodness and will be going thru radiation at a different hospital....after radiation I am determined to live my life. Our daughter is expecting her second baby and this will make five grandchildren. ages 12...9...7..2 and a newborn...between her and our two sons....so..grandma's got other things to be busy with. This Christmas the kids decorated Styrofoam wig heads for grandma...i loved it! I am also a Federal investigator with the Bureau of Alcohol, Tobacco, Firearms and Explosives (but I only deal in boom and bang) and want to get back out in the field....Hoping the radiation side effects won't stop me! 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Gaboplatin didn't really help my neuropathy,so I quit using it. I am on a slow magnesium which also contains calcium. I don't know that is anything that helps my neuropathy, but it hasn't gotten worse. I think it has helped a bit with my constpation though.

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