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HGSOC ...new to this discussion board

  • 1.  HGSOC ...new to this discussion board

    Posted 11-04-2025 21:54

    Hello everyone,

    Am new in this discussion board. I was diagnosed with HGSOC stage 4a in April 2024. Had debulking surgery in May 2024 followed by chemo: 1 cycle of IV carbo-taxol followed by 5 x IP Cisplatin-Taxol. Scans got clear. Started maintenance with Niraparib. In Feb 2025 had a recurrence (caught by a rising CA125) and showed up on a CT scan. Niraparib was stopped. Chemo started again: 6 rounds of Carboplatin and Caelyx. Follow up CT scan in April came clear. On maintenance Bevacizumab infusions every 3 weeks. 

    Question: CA125 never went down to normal values after the recurrence. It started going down when chemo was started but when Bevacizumab infusions were started, it started to rise again. CT scan in October came clear too but the rising CA125 worries me. Anyone else in similar situation? Please share. Thank you. 



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  • 2.  RE: HGSOC ...new to this discussion board

    Posted 11-06-2025 10:41

    @Keepingfaith thank you for sharing your story. I want  to say what a warrior you are for doing the 5 rounds of IP Cisplatin/Taxel. I was supposed to follow the same as you however after two IP ports, my body rejected both of the catheters due to post surgery inflammation. So I had to switch to Taxel/Carbo (the standard mix).
    I'm sorry about your recurrence and the CA-125 challenges however am glad the last CT was clear. I know any inflammation in the body can impact the level. Perhaps the Bevacizumab is causing some of the issues? I'm clearly speculating. Has your medical team talked about another CT? Have they provided any guidance or possible explanation on the CA-125 level?

    As you said, there may be other Teal Sisters here who can provide counsel from their experience. There's a crazy amount of knowledge on this site.

    #Recurrence #Treatmentandsideeffects#

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  • 3.  RE: HGSOC ...new to this discussion board

    Posted 11-06-2025 19:22

    Thank you so much for replying @Alwayslearning.  I am suspecting Bevacizumab to be the culprit too. On my insistence the CT scan is being repeated next week. My oncologist said that I need to ignore CA125 as my scan came clear and the scan matters more. She said CA125 can be elevated for various reasons. I am aware of this fact, but it is so hard to ignore the rising CA125. I am really hoping it's because of some other reason. 

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  • 4.  RE: HGSOC ...new to this discussion board

    Posted 11-06-2025 21:19

    @Keepingfaith welcome🩵🙏🏻

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  • 5.  RE: HGSOC ...new to this discussion board

    Posted 11-06-2025 21:27

    @Meinvan thank you so much :)

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  • 6.  RE: HGSOC ...new to this discussion board

    Posted 11-07-2025 10:18

    @Keepingfaith my gyn-onc has repeatedly told me that the CT is the gold standard so nice to see they are aligned on that messaging! Good luck with the CT. Am so glad they were able to get it done so quickly. Please let us know how it goes. Will be thinking of you.

    #Supportandencouragement

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  • 7.  RE: HGSOC ...new to this discussion board

    Posted 11-07-2025 10:38

    @Alwayslearning. Thank you so much. I was lucky to get an early appt for CT as there was a cancellation. Will keep you posted. 

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  • 8.  RE: HGSOC ...new to this discussion board

    Posted 11-21-2025 08:56

    Hi @Keepingfaith I'm wondering how you are doing. I believe you were scheduled for your follow-up CT scan. I hope you've gotten some answers relative to your strangely rising CA-125. If you get a chance, let us know how things are going. Thinking of you.

    #Supportandencouragement

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  • 9.  RE: HGSOC ...new to this discussion board

    Posted 11-22-2025 06:31

    @Alwayslearning Thank you so much for remembering and checking on me. All my scans came clear. Thank God. Such a big relief. The CA125 is still high though. My oncologist says she wont make any changes in the ongoing treatment as long as scans are clear. According to her she treats if something shows up on the scans and not the ca125 number. So all good for now. Repeat scans in 2-3 months. Hope you are doing good too. Take good care and thanks again :) 

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  • 10.  RE: HGSOC ...new to this discussion board

    Posted 11-22-2025 09:40

    @Keepingfaith well that is good news. CT scans tend to be the gold standard so clear scans are good news indeed. I'm also glad there is a plan for a follow-up. The CA-125 is such a strange beast that's for sure. Please keep us posted on your progress. Take good care. 🩵

    #Supportandencouragement

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  • 11.  RE: HGSOC ...new to this discussion board

    Posted 11-29-2025 15:19

    @Alwayslearning thank you so much! Hope you are doing well too. 🩵🩵

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  • 12.  RE: HGSOC ...new to this discussion board

    Posted 11-29-2025 17:40

    @Keepingfaith I am thank you. I'm 15 months into the burn (of my 24 months) on Lynparza. So far so good 🤞🤞. Also trying to get back into a regular exercise routine. I've gained a lot of weight since my debulking surgery. I guess that's what happens when all your estrogen goes 'bye bye' so quickly. 😗

    #Healthandwellness

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  • 13.  RE: HGSOC ...new to this discussion board

    Posted 11-29-2025 18:53

    @Alwayslearning I've gained alot.of weight too since my surgery and it keeps adding up. I need to start a regular routine of exercise too. Thank you for being my inspiration :)

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  • 14.  RE: HGSOC ...new to this discussion board

    Posted 11-30-2025 09:18

    @Keepingfaith 🩵

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