rise in CA 125 during chemo treatments

A1pena
A1pena Member Posts: 92
Hi There,

So, my mom just had her 6th infusion of weekly carbo/taxol. She gets her blood drawn each time but our medical oncologist doesnt seem to always want to share the CA 125 number. Three weeks ago it was at 201, two weeks ago it was at 204, skipped last week and today he said it was still in the 240 range. I know this weekly carbo/taxol regimine is fairly new for this type of cancer, but I would love to hear from anyone that has had this type of roller coaster with their CA 125. I should also note that the doctor said that if it doesnt go down next week, we'll try something else- ugh so sad and frustrating!!

Amanda

Comments

  • A1pena
    A1pena Member Posts: 92
    oops!
    I meant 240 not 204...
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    A1pena said:

    oops!
    I meant 240 not 204...

    CA125 is not a reliable marker for many many women.
    What is your mother's CA125 history? Did they take it before her surgery and after it; and then did it drop over the initial 5 rounds of chemo?

    My own CA125 history may give you some comfort. My CA125 was 50 before my hysterectomy; and then 150 afterwards. The oncologists decided that the '50' must have been a lab error and the '150' must have been my body reacting to surgery. So they took a CA125 right before my 1st chemo round to use as my 'baseline': It was 90. The first 2 chemos dropped that number in half each time, and the total '6 every-3-weeks' chemos brought it down to 12 at the end. Initial chemo was followed by 28 rounds of IMRT pelvic radiation and 3 brachys, and my post-treatment CA-125 was now 11.

    5 treatment-free months later, my routine bloodwork showed my CA-125 had spiked to 155, calling for a CT/PET where 3 lymoh nodes lit up and a recurrance was assumed. (2 of the nodes were in places where they could not be biosied by any means to get a confirmantion.) Based on that I immediately started weekly taxol in a lower dose. My CA-125 dropped hard the 1st 2 rounds and then leveled off for week after week in the mid-40's. After 10 rounds we were in a position like your mother where we were considering switching to a different chemo because of that 'flat' CA125 that had stopped dropping and was still not under tge <35 range they were looking for. We did another CT/PET to see what was really going on. SURPRISE!! Completely clear; NOTHING lit up!! My oncologists disagreed about what to do with this unexpected good news.

    We decided that I could safely take a break from chemo for a couple of months and see if perhaps "mid-40's" is normal for me. (After all, my gyn-onc pointed out, who ever has their CA125 taken before their cancer diagnosis, and so how can we know what is normal for a particular individual??) YESTERDAY, after 2 months of no chemo, I had my CA-125 taken. (drum roll...........): My CA125 was 34.6 !! I brought my CA-125 down 8 points WITHOUT chemo! In fact, the associated intestinal inflammation from the chemo itself may have been what was holding my CA125 up in the mid-40's all of those weeks! (any inflammation in the peritoneal area can cause CA125 to go up, not just cancer.)

    So please don't get too hung up on CA125. Some women level off in the 100's even in remission. I'd get a 2nd opinion before I switched her out of the weekly chemo regime, because I believe that is the new 'gold standard' in 1st line chemo now for ovarian and UPSC cancers. I know it's frustrating because we all get fixated on those numbers because that's all we have to try and measure whether we are doing the right thing. ((((hugs))))
  • jazzy1
    jazzy1 Member Posts: 1,379

    CA125 is not a reliable marker for many many women.
    What is your mother's CA125 history? Did they take it before her surgery and after it; and then did it drop over the initial 5 rounds of chemo?

    My own CA125 history may give you some comfort. My CA125 was 50 before my hysterectomy; and then 150 afterwards. The oncologists decided that the '50' must have been a lab error and the '150' must have been my body reacting to surgery. So they took a CA125 right before my 1st chemo round to use as my 'baseline': It was 90. The first 2 chemos dropped that number in half each time, and the total '6 every-3-weeks' chemos brought it down to 12 at the end. Initial chemo was followed by 28 rounds of IMRT pelvic radiation and 3 brachys, and my post-treatment CA-125 was now 11.

    5 treatment-free months later, my routine bloodwork showed my CA-125 had spiked to 155, calling for a CT/PET where 3 lymoh nodes lit up and a recurrance was assumed. (2 of the nodes were in places where they could not be biosied by any means to get a confirmantion.) Based on that I immediately started weekly taxol in a lower dose. My CA-125 dropped hard the 1st 2 rounds and then leveled off for week after week in the mid-40's. After 10 rounds we were in a position like your mother where we were considering switching to a different chemo because of that 'flat' CA125 that had stopped dropping and was still not under tge <35 range they were looking for. We did another CT/PET to see what was really going on. SURPRISE!! Completely clear; NOTHING lit up!! My oncologists disagreed about what to do with this unexpected good news.

    We decided that I could safely take a break from chemo for a couple of months and see if perhaps "mid-40's" is normal for me. (After all, my gyn-onc pointed out, who ever has their CA125 taken before their cancer diagnosis, and so how can we know what is normal for a particular individual??) YESTERDAY, after 2 months of no chemo, I had my CA-125 taken. (drum roll...........): My CA125 was 34.6 !! I brought my CA-125 down 8 points WITHOUT chemo! In fact, the associated intestinal inflammation from the chemo itself may have been what was holding my CA125 up in the mid-40's all of those weeks! (any inflammation in the peritoneal area can cause CA125 to go up, not just cancer.)

    So please don't get too hung up on CA125. Some women level off in the 100's even in remission. I'd get a 2nd opinion before I switched her out of the weekly chemo regime, because I believe that is the new 'gold standard' in 1st line chemo now for ovarian and UPSC cancers. I know it's frustrating because we all get fixated on those numbers because that's all we have to try and measure whether we are doing the right thing. ((((hugs))))</p>

    Everyone is different..
    I wouldn't get hung up on the CA125 marker. What I've found is some times it doesn't work with certain people. In my case it was 480 before hysterectomy, and as I went thru the chemo session it dropped slowly. After my last chemo it was 4 and has been that ever since. So...in my case he can follow it as it works....not everyone can use this as a good marker.

    I know with ovarian cancer it's a very good maker, but can have issues with certain people too.

    Best to you!
    Jan
  • A1pena
    A1pena Member Posts: 92
    jazzy1 said:

    Everyone is different..
    I wouldn't get hung up on the CA125 marker. What I've found is some times it doesn't work with certain people. In my case it was 480 before hysterectomy, and as I went thru the chemo session it dropped slowly. After my last chemo it was 4 and has been that ever since. So...in my case he can follow it as it works....not everyone can use this as a good marker.

    I know with ovarian cancer it's a very good maker, but can have issues with certain people too.

    Best to you!
    Jan

    Thank you for your replies
    Thank you for your replies and the reminder that the CA 125 isn't a perfect tool. She actually got her CA125 drawn in May 2009 and it was 9, it was 50 before surgery on Feb 1 and in the 200s a couple weeks ago- just seems to be steadily going up! Im hoping that since my mother's surgery was soooo intense, that her number is reflecting the healing process her body is going through right now. Here is praying for a lower number this Thursday!

    kind regards,

    Amanda
  • sallyh
    sallyh Member Posts: 16
    A1pena said:

    Thank you for your replies
    Thank you for your replies and the reminder that the CA 125 isn't a perfect tool. She actually got her CA125 drawn in May 2009 and it was 9, it was 50 before surgery on Feb 1 and in the 200s a couple weeks ago- just seems to be steadily going up! Im hoping that since my mother's surgery was soooo intense, that her number is reflecting the healing process her body is going through right now. Here is praying for a lower number this Thursday!

    kind regards,

    Amanda

    CA 125
    I had the same thing happen to my sister 6 months ago. Her cocktail was ineffective in dealing with the cancer and her Oncologist had to modify her Chemo treatments. The sad part was that we all had such high hopes for the treatment and it was a huge blow and definite morale deflating event to learn it wasn't working as we had hoped it would. The cocktail she is on now originally did lower the number but it eventually seemed to flatten out and once again the doctors are looking to yet again modify the Chemotherapy... ugh.

    Cancer in any situation is a very rough road and sometimes all we can do is have hope and pray that. My sister who was very active and in extremely healthy shape prior to cancer is now in a battle for her life but holds hope close with each and every day, you and your mom need to do the same thing. A friend gave us "My Journey Back to Life" a book by the cyclist Lance Armstrong and I recommend you and your mom read it as it gave me and my sister Peggy such hope for what lies ahead in your struggle.

    god bless
  • sallyh
    sallyh Member Posts: 16
    A1pena said:

    Thank you for your replies
    Thank you for your replies and the reminder that the CA 125 isn't a perfect tool. She actually got her CA125 drawn in May 2009 and it was 9, it was 50 before surgery on Feb 1 and in the 200s a couple weeks ago- just seems to be steadily going up! Im hoping that since my mother's surgery was soooo intense, that her number is reflecting the healing process her body is going through right now. Here is praying for a lower number this Thursday!

    kind regards,

    Amanda

    CA 125
    I had the same thing happen to my sister 6 months ago. Her cocktail was ineffective in dealing with the cancer and her Oncologist had to modify her Chemo treatments. The sad part was that we all had such high hopes for the treatment and it was a huge blow and definite morale deflating event to learn it wasn't working as we had hoped it would. The cocktail she is on now originally did lower the number but it eventually seemed to flatten out and once again the doctors are looking to yet again modify the Chemotherapy... ugh.

    Cancer in any situation is a very rough road and sometimes all we can do is have hope and pray that. My sister who was very active and in extremely healthy shape prior to cancer is now in a battle for her life but holds hope close with each and every day, you and your mom need to do the same thing. A friend gave us "My Journey Back to Life" a book by the cyclist Lance Armstrong and I recommend you and your mom read it as it gave me and my sister Peggy such hope for what lies ahead in your struggle.

    god bless
  • sallyh
    sallyh Member Posts: 16
    sallyh said:

    CA 125
    I had the same thing happen to my sister 6 months ago. Her cocktail was ineffective in dealing with the cancer and her Oncologist had to modify her Chemo treatments. The sad part was that we all had such high hopes for the treatment and it was a huge blow and definite morale deflating event to learn it wasn't working as we had hoped it would. The cocktail she is on now originally did lower the number but it eventually seemed to flatten out and once again the doctors are looking to yet again modify the Chemotherapy... ugh.

    Cancer in any situation is a very rough road and sometimes all we can do is have hope and pray that. My sister who was very active and in extremely healthy shape prior to cancer is now in a battle for her life but holds hope close with each and every day, you and your mom need to do the same thing. A friend gave us "My Journey Back to Life" a book by the cyclist Lance Armstrong and I recommend you and your mom read it as it gave me and my sister Peggy such hope for what lies ahead in your struggle.

    god bless

    Sorry didn't mention my
    Sorry didn't mention my sister started with carbo taxol regimen.