Hi lovely warriors,
I'm asking for your experience and advice regarding my wonderful Mum as we seem to be at a critical crossroads re treatment going forward. I'm obviously not as close to her treatment as she is so please excuse me if I get any terms wrong.
She is currently stage 4 and her OC is aggressive. She was diagnosed 2 years ago, had major surgery after which she was NED. As the cancer had spread into her bowel and bladder lining we were aware we weren't going to "cure" this bugger but were hoping for a good go as Mum at the time was only 60 and a hell of a warrior like you ladies. After surgery her oncologist recommended Taxol and Carbo but sadly she seemed to have an allergic reaction to Taxol after first dose so continued with Carbo on it own for the rest of that cycle. At the end of chemo she was NED and CA125 was "normal".
Unfortunately her CA125 started increasing just 6 months later when it was found to be in her lymph nodes. I argued with the onc at the time about whether she was platinum resistant but as we were a week over the 6 months threashold for recoccurance she felt Mum was platinum sensitive and ordered Carbo and Gem for her second line treatment. Mum found this tough going with several admissions for infections caused by neutropenia. At the end of the cycle her CA125 had reduced but was still high, however her liver was damaged through the chemo so she was given 3 months off further treatment. She was given a maintenance oral drug at the time (sorry I can't remember what it was) but this had no effect.
After nearly 4 months off her CA125 went crazy (around 25,000) so she was put back on chemo - this time Caelyex which has been incredibly harsh. She's managed just 3 cycles before she sufffered such terrible side effects they had to stop (burning of feet so she couldn't walk, liver damage). She's been in hospital again this week and after CT and an MRI they have found that the lymph nodes have increased slightly during chemo and she has fluid around her liver - the cancer has also now penetrated her liver although there are still healthy areas apparently. Her CA125 is currently 39,000.
We have been referred to Christie and have an appointment at the end of the month but the prof and mum's onc are currently both of the view that Rotterdam (which i understand to be 4th line chemo) is the best way forward.
We don't agree bearing in mind mum's response to chemo so far and the crippling side effects she's experienced. She's a tough cookie and will take anything if it means slowing the cancer down but to go through being practically bed ridden for 3 months with very little impact is horrific for her.
So warriors where do we go from here? Options as I understand it is 4th line chemo, trials - although because of mum's liver and her BRCA neg status a lot of good ones are off the table - paying privately for avastin, Going abroad for immunotheraphy. They are looking at radiotherapy for the lymph nodes in her back as these are causing her incredible pain, but they won't do anything with her liver which for me is the big worry. Considering asking for a referral to a liver specialist but not sure. We are also thinking about Taxol as she did respond well to this despite the reaction- wondering if they can manage the side effects (low blood pressure).
Sorry for incredibly long post, we are just at a loss and feel that what we do next is so incredibly important as mum's liver probably only has one big fight left in it.
Any advice gratefully received from you wonderful ladies. Thank you in advance.
She then had 6 x Caelyx and, like your Mum, had terrible side effects - sore feet and other places but her hands were so painful and cracked after the third dose that it was decreased by 20% and things got better after that. She had 18 months of stability but then the cancer woke up again. She has recently had Carbo & Taxol again. She saw the onc last week and he said the tumours have all reduced and her CA125 is 10, which was great news and we are really hoping for another nice long remission. (Or 'recession' as Mum put in her email to me!!). They had to leave the last Taxol out as Mum's right foot has gone numb and they think it may have been caused by the Taxol.
carbo/ caelyx rising ca125
