How many reach ned after firstline treatment? Stage 3-4.

[Daniellafriman]

Asking .. And if you want to say did you had low or high grade .

Thanks ❤

[Nancybib]

I was NED after my third and sixth cycle but recurred within a few short months putting me back on a new treatment plan. I am Fallopian tube serous carcinoma IIIC which is OC. Nancy

[Daniellafriman in reply to Nancybib]

Hope everything goes fine with you, good luck

[CancerCarerChats in reply to Nancybib]

Hello Nancybib. May I ask what NED stands for. My mother was recently diagnosed with stage 4 OC high grade serous so I'm still learning the lingo

[Yoshbosh]

I did. Stage 3 high grade. 6 rounds of carbo/docetaxel and debulking surgery. One month clear and counting... 😄

[Daniellafriman in reply to Yoshbosh]

Good for you and wishing you clear months 👍

[babsclunn]

I was grade four advanced had six cycles taxol/carbo and surgery have been ned for two year and four month x

[Daniellafriman in reply to babsclunn]

Wow! I hope you many more years clean !!

[CancerCarerChats in reply to babsclunn]

Hi babsclunn. My mother was recently diagnosed with high grade serous OC stage 4 and has just started chemo - cycle 2. It has been difficult so far but hearing that you are 2 years and 4 months is really inspiring.

[babsclunn in reply to CancerCarerChats]

Will be three years clear since treatment finished in July x

It is horrible when going through chemo but tell your mum it does get better and you learn a new normal life

[babsclunn in reply to CancerCarerChats]

I was also told initially no surgery but at end of chemo had such a good response went ahead with surgery after all

[CancerCarerChats in reply to babsclunn]

Just wondering - did u have Avastin? As I've heard a lot of people have been offered it.... Thanks

[babsclunn in reply to CancerCarerChats]

Had avastin up to surgery but unfortunately wound reopened after a week due to infection so could not resume

And it took four months to get it to heal properly and oncologist said time from last avastin was too long so could not carry the course on

[Annr5h]

I had NED 9 weeks since end of treatment. Had grade 4 OC

[Daniellafriman in reply to Annr5h]

Thats fantastic! Wishing many more years !!

[IrishMollyO]

Stage 3c high grade serous PPC . NED for 5years. Back on treatment since Aug for first recurrence

XXX

[Daniellafriman in reply to IrishMollyO]

Wow what a long time of ned. Wishing you could have long clear time in the future

[IrishMollyO in reply to Daniellafriman]

Thanks Daniella

Just in from my fifth of six chemos for recurrence in peri aortic lymph nodes. Will keep you posted. I wish you too all the best and and hope that you got positive feelings from all the replies.

XXX

[Lynn_B in reply to IrishMollyO]

I too have high grade serous ppc. stage 3c.Reoccurred after 10 months. Stable.Next scan Dec.next month.Feel good,so hoping for a clear scan.Ready to travel if all is good.😆☝💙

[Lynn_B in reply to IrishMollyO]

I to am also stage 3c high grade serous ppc.First treatment lasted 10 months.Then reoccurred. Nine months stable.Next scan next month/Dec.Feel good. Hoping for no changes.

😆👍💙

[Lynn_B in reply to Lynn_B]

Whoops already replied to this post.😉

[CancerCarerChats in reply to IrishMollyO]

Hi MollyO, my mum has stage 4 high grade serous and has just started chemo which is hard for me as her daughter to watch at the moment so hearing u have been NED for 5 years is really inspirational at the moment. I blog about her OC too if you want to check it out: cancercarerchats.blogspot.c...

[IrishMollyO in reply to CancerCarerChats]

Hi there

It is good that your mother has you to research and go to appointments with her.,

[IrishMollyO in reply to CancerCarerChats]

Sorry

Went too soon last time. Yes I was NED from Oct 2011 until Feb 2016 and then it recurred in my periaortic lymph nodes. My Cancer is PPC which in most cases doesn't have large tumours but Cancer cells in my peritoneum which were scattered through my pelvic area. Thankfully chemo worked for me and I am hoping the chemo I had before Christmas will keep it at bay . I am having a scan in Jun to check if the nodes have enlarged again. Mine is stage 3c high grade serous. I hope your mother responds well to treatment . The one good thing about high grade serous is that it responds very well to chemo. If I can be of any help let me know. Of course as you say it's very true that loved ones are as upset as the patient. Cancer patients themselves are very sensitive to the feelings of their loved ones so they try not to worry them. At least that has been my experience. Take care

XXX

[Hidden]

hi grade stage four. ned for about five months following usual carbo/ taxol and debulking. reoccured last june and am currently on doxil through jan, although oncologist has said they will order trestment as long as i wish it. as i am not ready to die i will continue

[Daniellafriman in reply to Hidden]

Oh, I hope you happy and good times !

[CancerCarerChats in reply to Hidden]

Hi Kagan, my mother was recently diagnosed with stage 4 high grade serous and she is currently having carbo/taxol. Consultant says no possibility of surgery. I'm just researching and trying to find some support online - how is it going?

[Hidden in reply to CancerCarerChats]

hello!

sorry not to have caught this earlier. think ive managed maybe 4-5 mnths., maximum, at ned. am post typical surgery, plus 3 different chemo drugs, but ca -125 still evalvated into the high 2 hundreds. i have various nibbling pains. some gnash their teeth. am weary more than anything.

hope to see big steps toward " the cure" this year. but if not me, hopefully some of us will live to see it.

and i'm very very cautious with the word "cure". in an indivdual with stage 3-4 metastases it should be used with care.

all goodwishes to you and to each of us.

[Sherrym]

Ned 3C & It will b a year in December. Hanging in I & hoping for immunotherapy to come online for us all ASAP

[Daniellafriman in reply to Sherrym]

That really fabulous ! yes,hoping that too..

[Hidden]

Hello, I've just been told I'm NED following 6 cycles for high grade serous 3c. X

[Choski in reply to Hidden]

Great news Lisa, I hope you can relax and enjoy stress free living but I know that it's hard to fully believe it sometimes!

Take care

Clare xx

[Hidden in reply to Choski]

You are right about the believing bit Clare, crazy as I'm normally a glass half full person!

I think that every meeting I had about this disease it turned out worse! I now have no expectations and I'm just going to enjoy every day. Xx

[Daniellafriman in reply to Hidden]

Wow! Happy for you

[ladygooner-uk]

Hi i was diagnosed stage 3a in 2009 ned for 2 years then relapse treated with surgery. clear for a further 2 years then further relapse, treated again with surgery... clear since june 2014.....

Sue

X

[Daniellafriman in reply to ladygooner-uk]

Thats wow! Have you low grade? I have heard that if recur with low grade, dont need chemo and with high grade you need it. But this is maybe false. Wishing you many clear years

[Lily-Anne in reply to Daniellafriman]

High grade serous responds well to chemo whereas high grade clear cell doesn't have as much success. They say because of its hobnail structure it is harder to infiltrate.

LA

[Daniellafriman in reply to Lily-Anne]

Oh okay! Thanks

[Lyndy]

I was NED after first line and debulking in Feb 2016. So 9 months.... still going. Stage 4 high grade serous with BRCA 1 xx

[Daniellafriman in reply to Lyndy]

You going good ! All the best for you

[LesleyGreengran]

I was diagnosed stage 3/4 high grade in 2010 and had two and a half years clear, them more treatment and over another year ned. I'm on chemo again now, looking for something that will work.

[Daniellafriman in reply to LesleyGreengran]

Hopin you find something what work

[SusanAM]

Hi

I was stage 3c clear cell August 2015. NED January 2016 after 3 taxol/carbo/avastin. 3 more full chemo sessions and have been on avastin only since then (clinical trial). Will finish avastin in December. Still NED.

Susan

[Daniellafriman in reply to SusanAM]

Wonderful! Thanks for reply!

[coalole]

I was diagnosed with stage 3/4 PPC - Have had six cycles of chemo and a full hysterectomy and omentum removal. Was told NED after a CT scan at the end of treatment.

Because I'm on the ICON8B trial I'm still getting bevacisumab every three weeks.

Diane

[Daniellafriman in reply to coalole]

Hoping ypur ned continue for a long time

[Katmal-UK]

Hi. Diagnosed stage 3. NED 4.5 years after op and 6 cycles of chemo and 3weekly Avastin trial. 18 months approx. NED after first recurrence, 6 cycles of chemo and trial for Cediranib. Currently 3years 3 months NED after 2nd recurrence, 6 cycles of chemo and currently on trial for Olaparib. Hope that information helps. Kathy xxx

[Daniellafriman in reply to Katmal-UK]

You are fantastic !

[Katmal-UK in reply to Daniellafriman]

No just lucky I think

[welshdoll]

stage 3b, low grade, Carbo/Taxol 6rounds ,ned 18months, Oncologist told me high chance of reoccurance, but will go for chemo again ,even though low grade .

[Daniellafriman in reply to welshdoll]

Thanks for reply. Did you know why she/he said that? My gynae oncologist said that my cancer maybe never recur cause its low grade (low grade doesnt want to came back that often than high grade) and firts op get rid off all the cancer. Hope everything go well with you and maybe your oc never recur

[Barlow1951]

Hi, I am similar to other ladies with high grade serous 3C and have been NED since first line chemo finished in April this year.

[Daniellafriman in reply to Barlow1951]

Fantastic!! Xxx

[Julie40]

Stage 4 PPC March 2024. Initially NED after chemo/surgery/chemo. Recurrence after 10 months and had further 6 months of chemo. Been on a parp inhibitor trial from April this year. Disease still in liver and stomach but stable.

[Daniellafriman in reply to Julie40]

Thanks for reply. Hoping everything goes well

[Julie40 in reply to Daniellafriman]

Thank you

[ellseybellsey]

Hi i am currently Ned 8 weeks post first line treatment, diagnosed with high grade 3c primary peritoneal, however they found heavy staining in the left Fallopian tube and said it probably started in the tube, but they treat it the same as OC.

Hugs Ellsey xx

[Mommoo65]

High grade serous PPC but surgery found tumor in Fallopian tube. NED at 6 month checkup. Next month it will be 9 months past frontline with check up on Dec 15. Hoping to still be NED.

[Emalou71]

Stage 4 PPC NED for 16 months before first reoccurrence xx

[Hairlessbeauty]

High grade serous 3C last year - debulking and 6 sessions of Carbo/Taxol. NED for 12 months. In recurrance now, started Carbo/Caelyx 12 days ago. BRCA1