Please tell me your success stories

[Kouyate]

So in short, I was diagnosed stage 3c back in Oct 2016 and had surgery followed by chemo. Had 1st recurrence summer 2021 so had surgery followed by chemo but during chemo the cancer started to grow again. So in Jan 2022 I was put on Rucaparib and then had surgery again in the summer. But now the cancer is growing again, so coming off Rucaparib which I’m disappointed about as was hoping that would work, and got told today my cancer is growing more rapidly than first thought so will be started my 3rd line of chemo in a couple of weeks.

So I’m starting to feel like a cat who is slowly using up it’s 9 lives ☹ and will the chemo work this time or will it just slow it down again? So I would really love to ready your stories please (if any but hopefully there’s some of you out there!) especially if you have gone through chemo like this with the cancer just not buggering off, and yet somehow you have managed to show NSD for a while even after so many recurrences x

[Lyndy]

Hello Kouyate

Dx stage 4 hgs in 2015, recurred in 2020 and again in 2022 but went on a trial that knocked it back again.

I would suggest looking for a trial or second opinion at this point might be good? xx

[Kouyate in reply to Lyndy]

Hi Lyndy, great to hear you had a positive result, and yes I was thinking of trials but thought I should at least give this chemo a shot first, but don't know if I'm doing the right thing, I'm just trusting my oncologist I guess x

[Rankij11 in reply to Kouyate]

Hi there !

I don’t know if this is the right advice / thoughts or not , but the truth is most of us have to live with the cancer ,(for the higher grades) rather than get cured at this time , regarding treatments that are available to us . So we keep searching for the treatments that knock it back for as long as possible . I think you have been through the mill by the sound of it , maybe it’s time to get a referral to one of the research hospitals and see if any of the trials are suitable ??? I really hope you find something out there to give you a well deserved break from ops and chemo

Best wishes

Jennifer

[organicinna in reply to Lyndy]

Hello dearest Lyndy. My trail worked for me just fir 4 weeks last January. after tbat i was getting ill, getting infections and bad blood tests, so they took me of this trail. But then again how we know where is real drug where is placebo? I think that you and other susessfull ladys got lucky real trial drug and me personaly was giving placebo? I will never ever know....

[Seedlings in reply to Lyndy]

Hi Lyndy,I'm just wondering what trial you are on ?? I'm in the West of Ireland but would be very interested to hear about it. My consultant is just great and very much into research. Tks for listening.

Ann

[Motiva]

Are you near The Christie Manchester-Professor Jayson or The Marsden, London-Susanna Banerjee?

I am at the early end of treatment. Second infusion yesterday. Disappointed CA125 gone up not down but early days 🤞 for us all. Fx

[Katmal-UK]

Hi. I was diagnosed 3b in oct 2007, still here despite 2 recurrences in 2012 and 2013. I also know of a lady who is still here in her 15th year despite 9 recurrences. Stay positive x

[Trickysite in reply to Katmal-UK]

That really is 9 lives,!

[Katmal-UK in reply to Trickysite]

I know, pretty amazing!

[Trickysite in reply to Katmal-UK]

This is a wonderful website and I have learnt more from this than from my doctors, but, when reading posts each day, I think we have to hold on to the fact that the ladies most likely to be having smooth rides are the ones least likely to post. That is why hearing the good news stories is so important. Love to everyone on this site. Emma xx

[Kouyate in reply to Katmal-UK]

Wow, that certainly is a success story thanku, its just difficult sometimes to stay positive x

[Katmal-UK in reply to Kouyate]

It isn’t always easy to stay positive. I was originally told I had a couple of years but still here in my 16th year. There are lots of people out there getting on with their lives that you don’t hear about. My dad had lung cancer at 49, had an op, no chemo and lived until a week before his 82nd birthday, my mum had stage 3 OC, was told she had 5 years if she was lucky, went 14 years with no recurrence before getting bowel cancer. You tend to hear of the ones that unfortunately don’t make it, not the ones who live on x

[Trickysite in reply to Katmal-UK]

incredibly wonderful to hear. Thank you, Katmal

[Kouyate in reply to Katmal-UK]

Exactly but thanku for giving me some hope 🥰

[Towergirl]

hello Kouyate, I was diagnosed HGS OC November 2017 age 69. 6 cycles of chemo and debunk surgery I was NED.

November 2022 my scan showed a recurrence in Liver, spleen and between. I was offered a complex 10 hour surgery but declined hoping chemo car/taxol will reduce cancer. CA125 57.

Good news after 6 cycles the chemo worked only visible is a reduced tumour on spleen. Started Olaparib (BRACA2) hopefully will further reduce my 2.5mm tumour or keep it small fingers crossed. Think I made the correct choice as CA125 is 16.

hoping your chemo goes well and does the job all we can do is hope. Hugs 🤗

[FlowerRose]

Hi. I haven't had a recurrence yet, but i finished chemo 3 years ago. Am on avastin/lynparza now and one year ago was told by my onc, who i love dearly, that he really did not expect me to be here right now. That's he's amazed. I think bc stage 3c came on extremely suddenly and extremely aggressively and i thank him for always telling me what was going to happen next and not telling me how limited my time was. I say all this to show that we can surprise both ourselves and our doctors, that there's almost always a reason to believe things can turn out ok. Again, hope I'm not cursing myself by saying this out loud! But considering i was supposed to be a goner by now i guess each day past that initial expected "last day" is remarkable.

[Kouyate]

Hi FlowerRose, that's great to read thank you. I feel a bit better after the weekend, I only got the news of Friday so it just knocked the wind out of my sales a bit so just needed uplifting and all of you're lovely comments have certainly done that 😍 x

[Seedlings]

Hi Kouyate, I had a bad Friday too. I was dx in July 2018 ,first recurrence in Dec 2019, second recurrence in Oct 2022. Just finished carbol/taxol for the third time in February this year. I was really hoping for a decent remission but unfortunately CA125 is rising...up from 9 to 27. Still in normal range but for me going on past history my consultant is suspicious!. Have a CT booked and repeat bloods and see him in a month. Feeling devastated tbh. My husband got cancer in January but got all clear thankfully last Tuesday. It's SOOOO hard to stay positive and get the mind to stop whirring!. Great to hear good stories , always gives me a lift so thank you all of you ladies who post them. We can only keep going and hoping. X

Ann

[Kouyate in reply to Seedlings]

Hi Ann

Great news about your husband 🥰 but wow, for both of you to go through this must be so hard. But you're experience pretty much mirror's what i've been going through as my CA125 has always been a good indicator with me that something is moving. I've pretty much spent the last 3 years thinking about nothing but cancer because of all my appointments and like you, Friday was a tough day so I just needed to read a few stories that would give me hope and that's what they've done and I'm glad the post has helped you get some comfort from the stories too. I wish you all the best x ❤️