Hi all, as expected, after the rise in my CA 125, the scan showed issues in what they think is my peritoneum, a couple of nodules near the liver which are at the moment less than 1cm (approx 6/7mm) and one area of thickening in the lower pelvic area. On the positive side though, all vital organs are clear. Onc said that because reoccurance within 3 months I can't have carbo/taxil again as she is worried that it may not be effective so soon after previous treatment and I may become resistant. She is going to discuss with her fellow specialists and look at other drug options and possibily a clinical trial.
Would be interested in others experience of 2nd line treatments after a short term reoccurance. Am trying to remain positive and will keep telling myself I will get better, but its a bit of a knock back to say the least!!
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Tess
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Dear Tess I'm so sorry you've had such disappointing news. There are quite a few posts on 2nd line chemo treatments on the blog 'which NHS what treatment' where ladies have relapsed quite quickly and perhaps you could send messages to ask for some more detailed feedback on what's out there.
Please let us know how you're getting on. Much love, Annie
So sorry to hear this. My second line treatment was caeylx which is now in worldwide short supply. It is effective for some people but not others - me included. My next treatment is going to be (I hope) cisplatin/etoposide. It is a hard regime called the Rotterdam Regime/Van der Berg Regime but apparently has been proven quite effective. Another popular second line treatment is weekly taxol (on or off a trial with another drug to combat resistance).
Please do let us know what they decide for you. Don't forget, you could always be getting a second opinion now (referral from your GP) to see what a top ovarian oncologist (may be in London) would suggest next. Ovacome can give you the best people to see on the NHS.
Sorry to hear your disappointing news. Trying to think it will be ok, when you find the right solution is difficult but you will keep trying, I know! From what I hear in many NHS meetings and talking with other women, taking part in a trial can only be a good thing. They offer you the best treatment and there's always a chance you'll get something new and more effective. If it was me I would go for it, if offered the chance.
I too had a recurrence within 6 months of taxol/carboplatin chemo. I started on 2nd line chemo on 12th March, this time cisplatin weekly by drip and etopicide orally daily for 2 weeks, then 2 weeks off, then another 2 weeks on. After my 4th cisplatin, my white blood cell count was too low to get my 5th treatment, and still too low the week after, so onc decided to stop both cisplatin and etopicide to let my body recover. Am to get a CT scan next week, then go back to see onc on 14th May, when I will get resuluts of scan. My CA125 is coming down, which is good, so am hopeful the results of scan will show reduction in tumours. Do not be too downhearted, just keep on fighting!
Hi Tess, mine re-occurred after 3 months,(lymph nodes,peritoneum, and stomach wall) first line treatent was carboplatin, just started second line today paclitaxel/mitoxantrone. I know is really disappointing, but as my oncologist said at the start theres always plan b ad c.so we'll keep fighting and hope its helped you that there are lots of us on 2nd line or even further down the line,Lots of love Sue x
Hi all, thanks so much for all your support and comments. I am still waiting to hear what my oncs recommendations are, but will bear in mind all your comments and suggestions and try and make the most informed decision on what to do next. Susie, what sort of side effects are you having from your latest drug combination, if any? Wishing you all, all the best for your ongoing treatments.
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Results Day
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The jam jar is getting fuller!
THE LONG AND WINDING ROAD.............
