Recurrence 5 months after initial treatment finished

[Sewingmaz]

Hi everyone,

I am hoping to hear reassuring accounts from others who have experienced a recurrence within a short period after initial chemo and surgery for HGSOC stage 3c.

I was diagnosed with HGSIC stage 3c in Dec 23. I had 4 cycles of chemo (Taxol and Carboplatin), surgery to remove ovaries, uterus, cervix and diseased onentum in May. I had 3 more chemo cycles after surgery and started Niraparib (maintenance therapy) in September.

I began to have similar symptoms to pre initial diagnosis in December 24 (constant belly ache and pain in my side). I have had a CT scan and blood test and have been told there is disease progression.

- Recurrence of the perihepatic and perisplenic fluid

-,Recurrence of the peritoneal and omental disease

-New nodularity related to the umbilicus

I am due to start chemo again 27th February - different chemo this time Caelyx -Carboplatin. 6 cycles (every 4 weeks).

I am desperate to hear from people who have come back from an early recurrence and kept any further recurrences at bay for good periods of time.

I get a lot from reading about other people’s successes and hope to hear from you.

thank you xxx

[Angeldust123]

Hi, I’ve had several recurrences since 2016. I got put on caelyx/carbo but only had two rounds due to toxicity. But having said that it gave me four years cancer free, which was excellent. It came back last year so they put me on Gem/carbo for 6 months. After treatment I got put on Niraparib but unfortunately it didn’t work. I’ve now just started hormone therapy for a while to see if it makes any difference. If not I’m going back on a weaker version of caelyx. I hope it works for you and gives you many years off chemo. Sending you love xx

[Sewingmaz in reply to Angeldust123]

Wow, really good to hear you had four years cancer free. I really needed to hear this x I sincerely hope the rest of your treatment goes well for you. It seems that everyone is different and there are lots of options each and every time there is a recurrence. Sending you love xx

[18Hilltop in reply to Angeldust123]

Hello Angeldust, I am new to this site. I have SHGOC which was originally diagnosed in 2020. However, it reoccurred on the 12th Dec 2024 for the second time after 18 months. I am told that progression is small (CA125 was 38) but in three areas of my abdomen. I started GemCarbo on the 9th Jan but am yet to make my day 8. I was due to have my 2nd cycle day 8 today but my liver enzymes are raised so they are omitting day 8 for the second time with the hope that my liver recovers in time for day one again of my third cycle on 25th Feb. I am feeling scared and am looking for any reassurance, I know that Gem can effect your liver. I wanted to know if you experienced anything like this whilst being on GemCarbo?

Many thanks

[Angeldust123 in reply to 18Hilltop]

Hi 18Hilltop, yes I had a few setbacks due to my Liver not working properly. Also got anaemia a few times too which made me feel really exhausted. But after a couple of breaks was able to carry on with the treatment. Got there in the end though. Good luck with your treatment. Sending you love x

[LovemyJackRussell]

This is such bad luck, Sewingmaz, and I'm sorry to hear it. I haven't had this experience (I'm about 7 months post treatment, on Niraparib and awaiting results of my last scan), but it is something we all dread and I will also be interested in hearing of others experience. Good luck with the new treatment, and sending positive vibes to help you on this treadmill.

[Sk72]

Hi Sewingmaz, I was diagnosed at almost exactly the same time as you - did 6 rounds of chemo/surgery/14 rounds of Avastin. My CA 125 has started going up steadily, still within range and the doctors say not to panic (but then who ever had a doc say "ok you may panic now" :)) - I have to test again in another two weeks and then we'll see.

So sorry I don't have a reassuring story for you but sending you much love and best wishes for the chemo.

One question - have you heard of/evaluated the Care Oncology clinic protocol? It's basically an approach that's complimentary to chemo and involves using a combination of offlabel drugs to attack the metabolism of the cancer cells (ie starve the cancer without starving the patient). There's been a change of guard at the COC but there are a bunch of doctors who are practising the same protocol and I can send you details of a couple if you're interested.

[Sewingmaz in reply to Sk72]

Hi, Thanks for replying. I haven’t heard of the care oncology clinic protocol and would be interested to hear more.

I hope all goes well with you - there are so many various treatments aren’t there! Avastin was never mentioned for me. So many variables that dictate our different treatment paths.

sending love x

[JanePW1965]

Hi Sewingmaz. My mum was diagnosed in December 2013. Like you, stage 3 HGS. Such a shock. She was 78 at the time. She had Carbo/Taxol either side of the debulking surge ry. She finished in July 2014. In Oct 2014 I went to the hospital for her three month check up. I went with her. All looked really positive. But on 6 Jan 2015 she had the devastating news that the cancer had come back. My twin brother and I were 50 two days later so that was a very strange birthday.

She had Caelyx for 18 months which kept the cancer stable but then it woke up. A scan showed little tumours around her body - near pancreas, aorta, diaphragm, and other areas. So she went on to third line chemo which was Carbo/Taxol again. This must have zapped the tumours as she has been NED since she finished third line in June 2017. Her CA125 had been around 9/10. Last week her onc called her after her latest blood test and the CA125 has gone up to 44 which is concerning but it may be nothing. She will be meeting him on 25 March and have another scan. Fingers crossed. She's also had lung cancer latterly and fought that off! She celebrated her 88th birthday in Oct.

Sending positive vibes your way. Jane xx

[Sewingmaz in reply to JanePW1965]

Thank you so much for taking the time to reply. Your mum sounds like a real fighter! I am feeling much more positive as a result of reading your message and those of others in the group with similar positive stories. I hope all is well when you meet with the oncologist on March 25th. Sending love xx

[JanePW1965 in reply to Sewingmaz]

I'm so glad my message has made you feel more positive. This site has been a security blanket for me. It has helped me so much to be able to share mum's journey. She is such a fighter and really positive. She doesn't dwell on things. Wish I could be more like her! Wishing you well with your journey. Jane xx