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Rise in CA125

MariaVMariaV ✭
in Treatment
Hi all. I am 49 and was diagnosed in October 2016 with stage 3c high grade serous. Had hysterectomy surgery in November 2016, and they also removed my omentum. He debulked as much as he could in my peritoneal cavity where most of my cancer was. Inserted an IP port into my peritoneum for chemo. Am BRCA negative. Had first line treatment from December to May 2017. Chemos were carboplaten (every 3 weeks) and taxol weekly. Was NED until symptoms started appearing in spring of 2018. First recurrence in June 2018 and started same chemo in July 2018, only this time instead of weekly treatment, it was a stronger dose every 3 weeks. Finished end of October 2018. Was lucky to partake in a clinical trial shortly after for Lynparza (Olaparib). CT scan after last treatment showed a spot that is either scar tissue or remaining cancer, but there is no way to know for certain unless it changes on a scan, which it has not up to now and my results are no progression of disease. I get a CT scan every 8 weeks because of the clinical trial. I get bloodwork done every month as part of the clinical trial as well. My CA125 got down to 6 after the 2nd recurrence in October 2018. In April it was 7. In May it was 9. In June it was 11. And now in July it is 18. I am worried. My Oncologist said we just monitor for now and can’t know anything for sure until CT scan shows progression of cancer, which he said normally doesn’t show up on a scan until your CA125 is between 50-100 and higher.

My question is, have any of you had jumps like this in your CA125 without it being a return/recurrence of the cancer? 

Thank you xo

Comments

  • FlowergirlFlowergirl ✭✭✭
    Hello @MariaV... welcome to the chat site and thank you for sharing your situation. You can also post your story under your bio page. Do I understand from above you are still on the trial and they are monitoring you? Yes, it is a common worry we may have with those numbers. It seems it is just so different for everyone - the CA125 can be a tool and may or may not be an indicator for you... hoping your Dr team can help you with some answers. How are you feeling otherwise?
    Hoping others can post about their experiences and coping techniques when the numbers rise or change. 
  • beachgirlbeachgirl ✭
    hello - yes, my treatment ended January 2017.  My levels at time of chemo ending were 11 - they have been up and down this past two years.  examples 11,14,14,11,15 Yes, it is a worry but keep in mind the number is still low.  I understand how you feel - wishing you all the best - stay strong my friend.    
  • MariaVMariaV ✭
    Thank you for the replies. I am BRCA negative/Wild but at the end of my last chemo there was a clinical trial open to BRCA Wild for Olaparib. So I’ve been in the trial since then. I just had this true jump in CA125 in the last month. I was going up 2 per month but this last time I jumped 7. I feel ok otherwise but I also know you can have a recurrence and no symptoms. I just hate living this way. I think I will see the true recurrence show on a scan in the next few months. Hoping I am wrong.
  • FlowergirlFlowergirl ✭✭✭
    Hi again @beachgirl and @MariaV, 
    There are also webinars on the main site that talk about recurrence and treatment. I find myself reviewing  them a few times to help with the understanding and it seems to lessen the anxieties for me... I hope you find them helpful
    The link is below and be sure to scroll down the page to see all the pre-recorded webinars
    https://ovariancanada.org/events-support/go-online-for-support/webinar-series
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