High CA125, chemo/avastin not working

[abhijeet9388]

Hi,

My mom too is having clear cell 3c ovarian cancer detected in jan 18 with CA-125 of 16k which later raised to 27k after 3 chemo cycles, later she had 3 avastin +chemo cycles which brought CA-125 to 3k, After this she had cyto reductive surgery in mid last year, she continued 4 avastin cycles but it stopped working so switched to lipodox for 3 cycles, last month she was suffering from bowel obstruction n chemo was not working, so had ileostomy surgery done 2 weeks back and she is recovering well can walk have semi liquid food etc, even after all this she is very positive n strong will power

can some share having similar experiences ? Will be helpful

Thanks

Abhijeet

[Indujoshi]

Hi abhijeet

Unfortunately my mom also has clear cell carcinoma which was not responding to any chemo we went from line to line she presented with bowel obstruction and had colostomy and no other surgery since I stopped all chemo in November as nothing ever worked for her and tumours kept growing we are on palliative care since then she was also very upbeat about treatment but now she is not well with tumours growing sorry for this sad post

[Serengeti in reply to Indujoshi]

Hi

May I ask what stage was she diagnosed

Thank you

[Indujoshi in reply to Serengeti]

She was diagnosed with bowel perforations leading to emergency surgery and colostomy stage 3

[Lindaura]

Dear Abhijeet,

I am so sorry to hear about your mom.

Clear Cell is notoriously hard to fight.

You will need to try the latest treatment options, and if none are offered , you will need to look for a second opinion.

Meanwhile, keep your mom well hydrated and well fed on appropriate foods.

Best wishes,

Laura

[abhijeet9388 in reply to Lindaura]

Thanks Lindaura

Yes I already took second opinion from another oncologist, however but he mentioned me now we don’t have much options left as chemo is not working well for metastasis peritoneal carcinoma.

However my mom is happy after recent surgery as she is recovering n able to have food, walk talk etc, however we are worried about next steps/days

Regards

Abhijeet

[Neona]

I have stage 3c clear cell although the highest ca125 was 67. I did not respond to chemo but am on a clinical trial called Patriot - the drug AZD 6738- which kept me stable for 14 months.

[abhijeet9388 in reply to Neona]

Thanks noena

The lowest ca125 for my mom was 1015 that was 1 month post cytoreductive surgery in July 2018 last year post that it increased to 2500 even after 4 cycles of avastin, so our oncologist used 3 cycles of lipodox which also didn’t work n CA 125 raised to 6500 causing bowel obstruction n severe pain, hence she had surgery.... however she fine now n recovering well from surgery.... so no immediate chemo as she is still recovering

I will ask about the drug you mentioned to our oncologist

[Bliney]

There is a clinical trial at UCLH and 5 other sites specifically for clear cell testing checkpoint immunotherapy. My oncologist said there have been some promising results for clear cell. I don' know the details as not relevent for me but definitely worth contacting the hospital and the Ovacome support team. All the best

[Neona in reply to Bliney]

I believe this is the peacoccc trial with the drug Keytruda. Desperately want to get on this trial but not sure I will qualify.