Never quite sure whether this kind of post is cheering or just annoying, but, hey, it might cheer someone up and the rest can move swiftly on. In March 2014 I was diagnosed with 3a OC, with a CA125 of 3,900-ish and the BRCA1 gene. Had a total hysterectomy and weekly carbo/taxol on ICON8.
Now I’m 77 and exactly 10 years NED with no recurrences, (but two hernia ops and lots of mesh, incontinence, neuropathy in my feet and curly grey hair. However, all are better than the alternative!) I will always be grateful to my wonderful NHS surgeon and oncologist and am now involved in several research projects that will hopefully lead to a result like mine. Hugs to everyone in the throes of this truly crap disease. Deb x
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That's fantastic. I was free for 18 years and have often wondered if there any research done into why some of us are lucky enough to get this time. Long may your good health continue.
Hi Lizzieanne, does that mean you recurred after 18 years? That must have been a shock. The research I’m involved with looks at the make up of tumours, to see if they have anything in common and predispose to a recurrence. I think people like us are the exception, not the rule. Deb x
Did take some supplements, vit C which my daughter got me, selenium which had always taken, IP6 but only for a couple of years. Supportive dr and oncologist always positive. I truly dont think any supplements added to my long cancer free time. Was given book You can heal your life and it was right for me at that time and kept me positive. Think it would be good to look into this further. It was a huge shock just grateful for those years visited some lovely places, lots of walking etc
I’m so sorry you’re back on the roller coaster. I’m hoping treatments have improved in the last 18 years - at least healthcare professionals know more about it. You sound like a positive person and I’m sure that helps and I’m sure your daughter is really supportive. Please keep us all posted about the next stage of your journey. Big hugs, Deb xx
Gawd, no, flax oil sounds disgusting! But the Care Oncology Centre seems/seemed to be well run, with possibly useful things used off-label.One of my lovely oncologists was involved. Another oncologist said that the only natural supplements they thought might be useful were ginger and turmeric. Drugs still seem to be best bet.
No but you jogged my memory there was a supposed cure of eating organic cottage cheese and flaxseed oil. I enjoyed it. Put it in a cup and little bit of black pepper, dont think it went towards my long remission but got a taste for this.
Hi Deb, not annoying at all, definitely cheering, especially for a fellow 3a 😊. I hope I will be saying the same in 10 years 🤞. Long may it continue 🥳❤️
Absolutely not annoying at all, I had a year from hell last year but am now NED and on maintenance therapy which probably wouldn’t be available if not for research programs, it’s so encouraging to hear that you’ve had so many extra years without recurrence, thank you 🙏
Only calcium and Vit D in winter. I did give up smoking (🤣), I don’t eat much red meat, don’t drink much and do two dance classes a week. Absolutely nothing special. I know there are lots of different anti-cancer regimens that have passionate followers, but I am just not organised enough!
I had stage 4 in 2000 then five surgeries,2courses chemotherapy,radiotherapy etc over five recurrences then clear since 2012.I am now 73 with a host of problems including two stomas neuropathy,joint paint but consider myself lucky compared to the alternative.My surgeon had never had a case like mine in his career and I still send him Xmas cards to show him that I am still around.
I am so so happy to read this. I was diagnosed 3b OC brca1 positive in Dec 21 and took a work sabbatical from last year. Just got a great offer and thinking I want to get back since I am doing great, feeling great with ca125 under control. I am 47. But you know that voice sometimes pops up warning what will you do if there is a recurrence. I am generally a happy, go with the flow person, so i keep beating up negativity. But posts like yours are the biggest help to actually see there is hope beyond just theory. It helps me take the plunge to try different things!
Congrats ! I’m in my 17th year and currently 11 years NED albeit on a trial drug. I always hesitate to post that info but I do believe it give hope to those having a rough time. Carry on doing what yr doing x
it’s so uplifting to read posts such as these. I remember when I was newly diagnosed and I trawled the internet for success stories hoping and praying, I would be a long term survivor. (I was diagnosed in 2017 stage 3b). I am so grateful to still be here too but have had ongoing bowel and stomach issues but as the poster says, I’ll take these any day over the alternative. I wish everyone newly diagnosed good health going forward x x
Wonderful Debs l think the newbies want to hear positive stories l most certainly did l was in a dark place just Over 7 years ago. But lm still here and really enjoy life most of the time. Had my ups and downs but l would say always be proactive in your care lm not saying lm totally free of problems lm not but most of the time lm looking forward to another adventure and l keep buying my frocks .Not feeling my best at the moment, so lve been sensible and lm getting myself checked out next Thursday at Christie's in Mcr practice what l preach to not ignore things.
Long may your recovery continue 🙏 love ,& big hugs SheilaFxxx
Great news, but you still have a way to catch up with me! 18 years and counting, and my mum was a 28-year survivor and died of something non-cancer-related.
And as many an oncologist has pointed out, if there really were a miracle cure or diet, we'd all be on it and no-one would have cancer. If there's a particular regime that makes you feel better and doesn't cost a fortune, go for it, but beware of anyone selling supplements - they are in it for the profit, not for the results.
hi Deb. Your post is not annoying at all to me. I am delighted for you and it gives me hope that I might also survive this awful disease for 10 years or more. Congratulations! x
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