I've just remembered it's that time of year again in the UK when the clocks change, which means its time for an update post which I will pin to the side bar.
Apologies that this wasn't done on Monday!
If you haven't posted for a while but would like to let your forum friends know how you're doing, please do leave an update in the comments below. You are of course always welcome to start a new post with your news, but it won't be pinned so may get a bit lost on such an active forum.
It will be great to hear how you're all getting on.
Best wishes
Anna
Ovacome Support Service Manager
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I am still on the Patriot trial at the UCLH Research Facility. I had a break from treatment owing to lung problems but am now on steroids and back on the drug AZD 6738. I seem to have a better quality of life on the steroids and am praying that the drug keeps working for me. Meanwhile the kidney problems continue and osteoporosis is looming.
Diagnosed Stage 3c Serous exactly 2 years ago and pretty much been on continuous chemo (3 lines) ever since Carbo/Taxol, Caelyx & Gemcitabene (plus full hysterectomy, removal of ommentum & large bowel (ileostomy) now in a “stable” state and today put on Anastrozole “maintenance” drug for 3 months to try and keep current “stable” state for as long as possible before needing more chemo.
But still smiling, still positive and wearing my big girl teal knickers every day & raising awareness of Ovarian Cancer as much as I can.
Hi. I was diagnosed with OC 3b in early 2016 but delayed treatment while I went to New Zealand to visit a new granddaughter. I finished chemo in October of that year, and Avastin in August of 2017. I am happy to be able to say that so far I am still clear. A bowel op along the way, and lots of niggles and worries as check up time approaches of course. My next appointment is in June and I do have some concerns but am determined to live until then in blissful ignorance!
Also, I have just returned from NZ to meet a second granddaughter, something I never thought I would be able to do back in 2016, when I thought "If i don't do it now, I will never be fit enough to do it in the future."
i was diagnosed with oc 11 years ago. I've been taking Letrozole for nearly a year now for my 5th recurrence. I have an appointment at the beginning of next month to see if it's still helping. Currently feeling quite well. Just done the Hope Course, which people have been suggesting I do for ages. Di
Hi everyone I was diagnosed with clear cell cancer 1c1 in 2016 I’m still NED but just lately I’ve been having strange symptoms of shortness of breath and a strange pain on the left side of my stomach that I can only describe as sore 🤔 I am keeping my fingers crossed the beast isn’t back 🤞🤞
I was diagnosed with low grade serous in Dec.2013 - had radical hysterecomy Feb.2014. Since then I have been on Letrozole for abt. 15/18 months followed by chemo which provided a little shrinkage and stable. However in January 2018 I had a 2nd surgery in London which necessitated a bowel resection and then put on Aromasin which I am still on and with my last scan in Feb. being clear and a CA125 of 14. My fingers are kept crossed continuously. Best wishes to all. Gwen xx
As I finally managed to complete my profile I no longer need to tell my whole story at the beginning of each post! At the moment I have completed my fourth cycle of Carboplatin/ TaxoI for second recurrence in my peri Aortic lymph nodes since 2016. Back then despite 5 years NED I was only offered Carboplatin which I consider to have been a wrong decision.
However I'm hoping that this time I get to be NED once more instead of stable as last time. I am however getting quite severe neuropathy which is mainly in my legs and not my feet and not so bad in my fingertips. Feel fine again on the third week. Keeping those same fingers crossed that I can complete my course and also bring my CA125 down to normal levels by that the end. It has come down from 146 to 96 to 66 and this week's will be available tomorrow.
As I haven't written a post for a long time I need to write one soon to ask the kind ladies on the forum for some precious advice. I wish everyone the best of outcomes and thank you Anna for your reassuring presence.
Hey everyone! I was diagnosed with clear cell 1C3 in October of 2017. I'm still NED but having some worrisome symptoms. Lots of pain and bloating. I see the doctor next week, and I'm crossing my fingers that it's not back. Otherwise, life is pretty well back to the normal grind of things.
Hi Teal Sisters! No new news in my world, thank God. Diagnosed 3b in September, 2015. Usual surgery. 6 chemo treatments. 4 of which were IP. My CA125 has held steady at 6 and my oncologist hasn't felt the test has been necessary at my last 2 checkups. No recurrences, no big concerns right now. Looking forward to summer and getting my grandsons to the pool and beach.
Now 2 1/2 yrs NED from mucinous OC 1C1. Feel lucky so far but still very very paranoid about recurrance - not sure if I will be able to shake that off. I still try and keep up to date with current treatments and to how everyone else is doing. Best wishes to everyone.
Diagnosed 1C mucinous & endemitroid in 2016. 3 years NED after 6 months Carbo post the big op. Finally learning to live a little after a battle with post treatment anxiety & depression. Have taken early retirement and am mum to 2 wee Schnauzers... who make me smile and give me purpose. Life is good - but the shadow of recurrence is always just lurking over my shoulder. All the best to everyone - especially those going through tough times xxx
Hi Everyone, I was diagnosed stage 3C high grade serous ovarian cancer in September 2007 so almost 12 years ago now. I have had 2 recurrences - in 2010 on the surface of my bowel which was successfully removed and a recent surgery in Feb 2019 to remove a small tumour on my diaphragm. Currently on 3rd line chemo and doing well despite the usual chemo side effects. I wish everyone a long and happy life spent in good company and surrounded by people you love. 💕
Hi and thanks for sharing your journey. 12 years is a great deal.. you are a hero!
To ease up chemo side effects try to flush toxins as much as possible. Water with lemons, herbal teas, etc.. Miso soup used to give me a huge energy push.
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