Hi everyone. I have been reading you post for the last two years always amazed at your bravery. I have not posted before now except to respond to somebody else recently. I was diagnosed July 2018 with 3c ovarian cancer. I responded well to first line treatment debulking surgery and chemo achieved NED status and had a 7 month remission.
I had second line treatment with only a partial response which stablelised my many tumors and I was able to commence Parp Inhibitor maintenance drug called Rucaparib. Unfortunately I have only been on these 5 months recent scan show a new tumor in the Spleen organ my other tuners are relatively stable but my CA125 is onwards and upwards.
I now have limited options....so Paclitaxel on a weekly dose and if I achieved a response I can enter the prompt trial to test an immunotherapy drug.
All this I am told will extend my survival time possibly by a year as I am platinum resistant with limited options. Two year roller coaster ride, always hopefull but realistic and always willing to change the parameters of my life and focus not on what can't be done but on what can be done. Returned to work throughout, exercised and ate healthy. I live alone but cherish my friends ....but I'm struggling now want to remain brave and focussed but the nights are long and my bravery is waining Treatment starts tomorrow. I am looking at a second opinion in the mean time. Has anyone defied the odds of being platinum resistant and achieved longer that a year survival or are you in my situation either way I would like to hear from you.xxx
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SilverOrca
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Hi there I was diagnosed 2014 stage 3c high grade serous. I had surgery followed by paclitaxol & carboplatin which allowed me 18 wonderful months where I felt almost normal apart from tiredness. Had a recurrence in 2017 another surgery followed by more chemo and pretty much been in treatment ever since. I’ve just had a long spell in hospital whereby I’ve now been told there’s no treatment left so it’s about quality of life now and as long as I have that I will fight and carry on. I guess what I’m trying to say to you is if you are still being offered treatment and you are able to tolerate it which by the way I’m full of admiration for you in carrying on working I would try it as as they can only quote averages and everybody is different. Good luck
Yes! I recurred during frontline chemo. I went for second opinion in London and have been on a trial for 2 1/2 years so far. Sitting in hospital waiting for scan now- fingers crossed. I have clear cell stage 3c.
May I ask you where did you go for second opinion, please? I was diagnosed in 2015 with 3c endometrioid ovarian carcinoma in UCLH. Dr. Rebecca Kristeleit was my consultant till she left to another hospital. The consultant now is Michael Flynn, very new to me.
I’m sorry if it’s incorrect mentioning names.
But I am lost and and alone. I’m from Lithuania, my parents are waiting for me to come back.
Yes I went to see Dr K as well- I believe she has moved to Guy’s. There is a clinical trial called Atari which is run by the Royal Marsden and is the same drug that I’m on plus olaparib and I believe it takes endometrioid patients. The trial is run by Dr Susanna Banerjee I believe. I have ben on the drug AZD 6738 on the Patriot trial for 2 1/2 yrs so far- just waiting for my scan results. Please feel free to message me if you would like to chat, best wishes, Wendy
Hello. 1st taxol is easy. I fast 24hrs before and after herb teas veg consomme lots of water this limits side effects. Drink lots of papaya leaf tea to keep platelets up. Platinum resistance : sometimes after being off a year you can go back on. Stay strong find life funny hugs
Hello from what you’ve written we are in almost identical positions. I was diagnosed 3c in January 2019 and had good response to initial treatment (NED) but reoccurred after 8 months and second line chemo had no impact so deemed platinum insensitive. Now on weekly Pacitaxol waiting for scan to see if this is helping. Will also go on immunotherapy trial if have responded to chemo and there is tissue to biopsy. Being treated at Barts. Happy to swop notes on progress. Jane
Hi So sorry it's taken A while to respond, thanks for getting back to me....I am at B arts also Started weekly taxol a month ago every Friday. Hope you are doing ok on it apart from a little tinkling in fingers and feet side effects are not to bad. I have just finally taken medical retirement which was quite upsetting for me . I was a ranger and loved the job but must now turn the page to another chapter. I would like to hear how you are getting on as we are both in very similar situations. I am trying to stay fit still exercising it helps with the fatique and eating healthy still . My ca125 has dropped in the last month which I guess is hopeful a response would get me into the trial as well. Have you talked to anyone on the trial who is platinum resistant I haven't managed too yet.
Hi SilverOrca.. I too am in a similar situation health wise as well as doing it on my own so I empathise with you, the nights are long and not easy but we are getting there and we can do this.. big hugs 🤗
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platinum resistant, cancer back after 4 months 
Caelyx treatment after platinum based chemo my cancer resisted.
gemcitabine with carboplatin for Platinum resistant
Are you actually platinum resistant or not? 
