CA125 continues to rise even though chemo is working

jjtrim
jjtrim Member Posts: 27
in Uterine/Endometrial Cancer #1

Hello Ladies,

 

Hoping to get some insight from you all regarding CA125.  My mom received the great news that her cancer (recurrent UPSC) is shrinking and the chemo is doing it's job.  Pet Scan (after 3 sessions carbo/taxol) shows decrease in size and decrease in metabolic activity in the lymph nodes and improvement in the peritoneal carcinomatosis. Initially, before starting chemo, she had a small pleural effusion developing in the right lung and results show it has now increased to a medium sized pleural effusion.  Though at this time, my mom at this time has no symptoms at all related to her lungs. She also has some pretty significant lymphedema in her mons pubis area which is suspected to be due to the removal of lymph nodes with the hysterectomy.  The edema is very bothersome and is was exacerbated at the time her blood was drawn for the most recent CA125.

The most concerning thing at this time is that, despite the pet scan showing improvement, her CA 125 continues to rise:

After 1st chemo: 251

2nd chemo: 303

3rd chemo: 283

4th chemo: 327

5th chemo: 427

The N.P. has examined her lungs and does not believe the pleural effusion is an issue right now especially since it is asymptomatic.  She believes the exacerbation of the lymphedema could be triggering the tumor marker to rise.  I know that the CA125 is a fickle marker and is often not truly reflective of the state of the cancer.  Some doctors don't even monitor it because it can be so inconclusive.  And the positive petscan results competely trump the CA125.  Still... it would be so nice to see it fall. 

 

I guess I'm just wondering if anyone has personal experience with their CA125 rising when their cancer is shrinking?  What was the cause? 

Thanks,

Jenny

Comments

  • Ribbons
    Ribbons Member Posts: 154 Member
    edited July 2019 #2
    Can’t offer you much

    don’t know a lot about it except my Dr. told me it rises due to inflammation in the pelvic  region, so it seems logical the lymphedema is causing the high numbers

  • derMaus
    derMaus Member Posts: 558 Member
    #3
    Ribbons may have this one

    Ribbons may have this one called. I hadn't thought of the lymphedema connection but it makes good sense. I, also, had my first inklining of lymphedema in the mons area and from there it rapidly spread down my right leg. You should ask your doc for a referral to lymphadema therapy; my hospital has a "lymphedema clinic" who does drainage massage and also assesses/prescribes compression garments. There are some excellent self-help videos on YouTube so you can familiarize yourself with the mechanics of the whole thing. I found it much easier to do exercises when I understood the whole lymph system, which I knew absoluty nothing about.  I like "Bob and Brad", a couple of corny middle-aged physical therapists who have a group of videos. Here's a link to one of them, you can find others:  https://youtu.be/j0dAgMMfjqo.   I also like this woman's videos, very gentle and sensible, at the "Natural Health Resources" channel. https://youtu.be/5LtSFqpRHn4.  Hopefully your mom can get some relief !

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #4
    yes just talked to my doc today

    I just had this converstation with my doc today as my CA125 was 60 and now in a month's time gone up to 75! She said it can be an unreliable test and that she looks at the clinical picture first and the scans and doesn't rely on the that test. And as your doc said there can be other things that can raise it. 

    Hope that makes you feel a little better I know it did for me. xo

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #5
    Ca-125 rises in response to

    Ca-125 rises in response to inflammation, so it is entirely possible that it's just rising in response to the inflammation associated with the effusions.  It's good news that the cancer is responding to the chemo, though!  I'd focus on that.  Hope your mom is tolerating the chemo well.

  • Armywife
    Armywife Member Posts: 451 Member
    #6
    derMaus said:

    Ribbons may have this one

    Ribbons may have this one called. I hadn't thought of the lymphedema connection but it makes good sense. I, also, had my first inklining of lymphedema in the mons area and from there it rapidly spread down my right leg. You should ask your doc for a referral to lymphadema therapy; my hospital has a "lymphedema clinic" who does drainage massage and also assesses/prescribes compression garments. There are some excellent self-help videos on YouTube so you can familiarize yourself with the mechanics of the whole thing. I found it much easier to do exercises when I understood the whole lymph system, which I knew absoluty nothing about.  I like "Bob and Brad", a couple of corny middle-aged physical therapists who have a group of videos. Here's a link to one of them, you can find others:  https://youtu.be/j0dAgMMfjqo.   I also like this woman's videos, very gentle and sensible, at the "Natural Health Resources" channel. https://youtu.be/5LtSFqpRHn4.  Hopefully your mom can get some relief !

    Thanks!

    I'm watching these videos and going to put this into practice tomorrow!  Thanks for sharing the links!

  • jjtrim
    jjtrim Member Posts: 27
    #7
    Thanks

    Thanks everyone.  Hoping it's either the lymphedema or the pleural effusion.  Pet says cancer is shrinking so I'm focusing on that.

  • Flufff
    Flufff Member Posts: 67
    #8
    jjtrim said:

    Thanks

    Thanks everyone.  Hoping it's either the lymphedema or the pleural effusion.  Pet says cancer is shrinking so I'm focusing on that.

    How are your mother doing now?

    I'm having kind of the same recurrence as she did. I hope she is well. Did the treatment work?

    Hugs from Maiken. :)

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