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CA 125 going up

namedropper
Posts: 102
Joined: Dec 2014

Hi, My CA 125 numbers have been going up.  8.9.9.13.17.30. I am 18 months NED with MMMT uterine cancer. The Dr. said I have to wait a month to repeat the blood test and if it keeps going up another Cat scan to see if I might be having a recurrence. I feel great except for my RA.  They said that because it almost doubled they are concerned. YUK. Since it has been a while they said if anything shows up they can hit it with chemo again. I had  5 taxol/carbo treatments. Did anyone else ever had this happen to them.   I don't post very much but I do read other posts everyday. Everybody on this post is really helpful.    thanks, Sue

bluehyacinth
Posts: 45
Joined: Feb 2016

I am having this happen right now as well. I am UPSC stage 3CII. Mine went from 17, 35, 35. One doc said well still within range and the other yes a bit concerned as I was on chemo when it went from 17, 35. I am going on a trip for a month, but will have a pet/ct when I get back and a repeat ca125. It never ends.....until it does.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

CA125 levels going up and down within the normal range is "mostly" normal from what I have been told. It is a guide for us to at least get things checked out but doesn't mean a recurrence just because of a jump. Mine was within normal range BEFORE my surgery - 21.7. Then after surgery and during chemo it jumped to 90. Then back down to 35 for the next several.  I just had one done last week and for the first time it was in the teens... 14. It is scary when that darn number goes up. But, even a cold can make that happen.

I hope you both find yours to be nothing but normal!

Love and Hugs,

Cindi

bluehyacinth
Posts: 45
Joined: Feb 2016

Once past meno pause and a radical hystorectomy it does not bob up and down that much as there is nothing in there anymore, it rises if one has an infection in there, cyst, fibroid etc It is more useful for ovarian cancer. Mine was over 100 before surgery, I also had a serous tube and ovary and one does not want it to double while on chemo even though it is within range. My gyno like it to be under 20 for menopausal women. It is useful for some and therefore I have one every month. Does not sound like it is useful for you since it was normal before surgery.

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

Hi Sue, I'm battling MMMT uterine cancer, too. My gyn-onc told me that CA-125 is not a good marker for me. I've read other posts that many things - like infections, etc. - can cause it to rise. I hope that is the case for you this time. Hang in there!

namedropper
Posts: 102
Joined: Dec 2014

It went up a little again so I am getting a scan on Tues. to see what is going on. The Dr. said because it has been going up they want to see what is going on.  I will know that afternood he said.   I was just starting to feel really good again.   I will keep you posted.   thanks for the support.     Sue

takingcontrol58
Posts: 248
Joined: Jan 2016

 Namedropper,

You should ask your doctor to test for HE4 as well as CA125.  They say HE4 is a better marker. I get tested
for both.  You also may want to test for Ferritin (measures iron reserves- cancer loves iron and glucose).
Mine were very high when I was diagnosed with cancer. They are now very normal and I am NED. This test
is often used to tell if your cancer treatment is working. Most doctors do not test all the relevant markers.
I am also tested for Insulin Growth Factor-1 (IGF-1)- it is one of the main fertilizers for endometrial cancer.

Good luck.
Takingcontrol58

Good luck.

namedropper
Posts: 102
Joined: Dec 2014

Thank you so much. I was low on iron  even before cancer and now take a pill and eat more beef .   I also have had low blood sugar and have to eat every 3 hours or my sugar drops. It is called reactive hypoglycemia and I have had it for a lot of years.    I first had breast cancer in 2012  and didn't need chemo and then uterine MMMT cancer.  They were not related.  I will ask the DR. on Tues after he gives me my scan results. I also have Celiac since 2008 and that is when they also found the low blood sugar.    I am going to be 75 years young and I am still working.  Thanks again   I learn so much from everyone.  All I can do is hang in there.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Before I got my diagnosis besides bleeding one of the things that brought me to the Dr. was feeling totally exhausted. Blood tests showed super low iron levels. I had also lost about 15 pounds (and I was definitely not dieting). My primary care doc said (though I didn't want to hear it at the time) that anemia is often connected with cancer. 

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Lou Ann M
Posts: 996
Joined: Feb 2015

hope everything goes well with the scan today.  I have stage 4 high grade serous pappillary edndometrial andocarsinoma  my CA 125 seems to be very accurate.  It was even very predictive while I was on Doxil.  But remember everyone is different as you see on here.  It is not a good predictor for many.  Hoping for the very best for you .  Hugs and prayers, Lou Ann

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

all goes well with your Ca 125 blood tests. My gyn onc told me that if it starts to double then that would raise an eyebrow. With that said, any infection can cause it to rise. A sure bet is to have a pet or cat scan. I hope for the very best for both of you.

Cathy

 

namedropper
Posts: 102
Joined: Dec 2014

I will have my scan on the 24th at 9am est. They should have the results by afternoon. Always something.  I have had so many cat scans that I have lost count in the last 12 years.   I will post when I know something.  I know the waiting is the worst.  Thanks to all of you for being there for me and all of others.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

Sue, The wait really is the worst! I'll be thinking about you in the morning. I hope all goes well and that you get good news on the other side of the test. We are here for you to celebrate or hold you up!

Love and hugs,

Cindi

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

And hoping for the best. The good thing is that you will have the results the same day.  We'll be waiting along with you.

Chris

brissance's picture
brissance
Posts: 192
Joined: May 2016

Sue, I know tomorrow is the big day.  My own doctor places little to no confidence in CA 125 for Uterine Cancer.  I had to ask for the test to be taken during blood test after reading it on this board.  I trust him and so I have not paid attention to the results one way or another.  Just one more added stresser.  I am not saying it is a good test or bad test, don't know but at best it is only an indicator to follow up.  I feel sure you will have great results tomorrow.  Many hugs of comfort and prayers for healing and happiness are coming your way!

EZLiving66's picture
EZLiving66
Posts: 1370
Joined: Oct 2015

CA125 is not a good cancer marker for me either.  Mine was 8 when I had my surgery and the cancer was already Stage II, Grade 3.  After surgery it went to 11.  I have not had it test again.  I'm hoping for the best today!

Love,

Eldri

namedropper
Posts: 102
Joined: Dec 2014

Great news. Still Ned 18 months later.    Even though my CA 125 went up I am still NED.   Yeah.   They think that my gerd might have caused the rise.   Thank you for your thoughts and prayers and hugs.  I will now do a happy dance.

EZLiving66's picture
EZLiving66
Posts: 1370
Joined: Oct 2015

I'm doing the happy dance with you, Sue!!!  That is WONDERFUL news!!!

Love,

Eldri

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

Thank you so much for sharing this good news! We can all use more NED!!

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

SO happy to hear this!  Been thinking about you since I woke up this morning. What great news!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Congratulations, namedropper! I am glad that you can now breathe a sigh of relief!

Hugs,

Cathy 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

Sue, YES!!! That is wonderful news. Thank you for reporting back so quickly too.

We are all doing the happy dance with you!

Love and Hugs,

Cindi

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ConnieSW
Posts: 1456
Joined: Jun 2012

pleased for you.

Donswife48
Posts: 307
Joined: Nov 2015

Another good news update from our fellow sisters.  How pleased I am to hear you can relax and enjoy some summer fun. Hugs Nancy

namedropper
Posts: 102
Joined: Dec 2014

Hi again, I  just got my CA 125 repeated again. I have MMMT uterine cancer. They are doing it every month now since it kept going up. I was up to 40 today and was 30 last time and 17 the time before. . I just had cat scan last month and all was clear but now they are saying that they will repeat the CA 125 in July and if it goes up again they will do a PET scan.  I have had at least 35  or more Cat scans done in the last 12 years for other things but this last time I had a reaction to the dye. They rushed me to the ER dept. right from getting out of the machine and I was there for 5 hours. I am really scared about the Pet scan dye.   I feel like a yoyo. I was really dancing fast after my Ct scan but now I am doing a slow waltz.    I have been ned 19 months now. 

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

Namedropper, could the rise be from an undiagnosed infection? I understand that is one of many non-cancer related things that might cause it to rise. Keep on dancing! Kim

namedropper
Posts: 102
Joined: Dec 2014

Hi, I think i would have a temp or feel sick. The Drs. said that the only thing that could do it would be if my pockets in my intestines got infected but they don't seem to be. I would have pain etc. They said it could be brewing somewhere. I just had a cat scan on May 24th 2016 and I was NED. I also asked them how rare this MMMT uterine cancer is and they said they would have to look it up. It is very rare. I had breast cancer in 2012 and the was lobular and not what most women get.   Lucky me     thanks for your help....I go to the Cleveland Clinic and they have been wonderful.  

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