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  • 1.  Possible start of 1st recurrence

    Posted 3 days ago

    Hello everyone, newbie here! I somewhat stumbled onto this site today and the timing feels quite right. I was diagnosed with Stage 3 HGSOC July 2024. 3 rounds chemo, debulking in Oct, 3 more rounds of chemo finishing in Jan 2025. Surgery went "mostly" well but they could not get everything. CA125 down to 6 when I finished (wish I had celebrated that more!) started 12 rounds of Avastin and finished end of August. My CA was normal but climbing from 6, 7, 10, 50 and then up to 290. The last 4-5 tests have all been in that 300 range so it is high but stable. My CT in May was clear but the last one in August showed some fluid and "opaqueness" in the omentum. I have tolerated treatment really well and, other than stiffness, feel quite good. I still have no symptomsI will be likely sent back to the gyno onc next week for a follow up and to see what is going on. I am a bit discouraged that I did not get longer "NED" before having to contemplate more treatment. They still don't know if it might be inflammation due to the Avastin as all the rest of my blood work is good and my other organs are fine (touch wood). I am trying some supplements, exercise all the things to try to stay healthy. I guess I am just wondering what peoples experiences were with 2nd rounds of treatment. Anyone have a longer "NED" after a 2nd round then they did the first? Guess I am just looking for some hope. (BTW I am BRCA and HRD negative which makes me happy for my family but a bit frustrated for treatments). Clinical trials were mentioned, including the Elahere one, but I thought clinical trials were more of a last option? Anyway, sorry for the ramble. I look forward to hearing from anyone!



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  • 2.  RE: Possible start of 1st recurrence

    Posted 3 days ago

    I'm sorry you're going through this. I'm in a very similar situation. I'm 62 and was diagnosed with HGSC Stage IIIC on Oct 1, 2024. I started chemo on Dec 6, 2024 with Paclitaxel and Carboplatin (4 cycles), then had debulking surgery on March 5, 2025, followed by 2 more rounds of chemo, which I finished on April 25, 2025.

    My CA125 went from 1430 before treatment down to 34.7 on April 30 after finishing. A CT scan on May 6 showed NED.

    Unfortunately, by Aug 1 my CA125 had risen to 556, and a CT scan the same day showed ascites, peritoneal thickening, and a mass confirming early recurrence and platinum resistance. I'm negative for BRCA, HRD, and Fra.

    I started weekly Paclitaxel with bi-weekly Bevacizumab on Aug 27, 2025. My CA125 was 553 on Aug 1, jumped to 1000 by Aug 26 (just before second-line treatment), 1090 on Sept 2, and now has come back down to 553 after 2 treatments. 

    My oncologist is treating this as a long-term disease, focusing on keeping it managed and controlled as much as possible. 

    It's definitely overwhelming to have things change so quickly, but like you, I'm trying to stay strong and take it one step at a time.

    I wish you the very best as you move forward.  I hope you get a longer NED with your next treatment 🩵

     

     

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  • 3.  RE: Possible start of 1st recurrence

    Posted 3 days ago

    Hi Cole, thank you for your reply. I am so sorry that you are experiencing this as well. it is too soon yet to know what the next course of treatment will be and when as the scan results were still somewhat inconclusive. I really did think and hope that I would have more time before having to deal with all this again. I still feel good and don't yet have symptoms so Iwould like to try to delay starting up again a bit if possible. Also exploring other natural options to support my system. I am 52 with no family history and none of the "red flags" so this whole journey has been a shock. Wishing you better days

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  • 4.  RE: Possible start of 1st recurrence

    Posted 2 days ago

    @GoldenDaisy glad you found this group. The women here are true warriors.  I just finished my first course of chemo Pax and carbo only, I was do in Feb.  I'm brca and hrd neg too.  So I get the frustration around no treatments post to keep us Ned.  I haven't had this discussion yet with my oncologist but it worries me. Good luck.  Ask away they will answer.🩵💪🙏🏻

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  • 5.  RE: Possible start of 1st recurrence

    Posted 2 days ago

    It's such a shock to face this when there are no family risk factors. It feels so unexpected and unfair. I'm in a similar place, I don't have symptoms right now and I still feel good. I walk briskly every day and do strength training through the EXCEL maintenance program.

    I hope you get clearer answers soon, and in the meantime I'm wishing you strength and peace as you navigate what's next. Please take gentle care of yourself 🩵

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  • 6.  RE: Possible start of 1st recurrence

    Posted 2 days ago

    @Cole so glad to hear your CA-125 has been headed downward post treatment. I hope you are doing well with any post treatment side effects. Thinking about you. 

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