How long will oc stay away: I have just come back... - My Ovacome

My Ovacome

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How long will oc stay away

nikki9 profile image
11 Replies

I have just come back from seeing my onc. I am on second line chemo 4th cycle good news ca125 is now down from 4000 to 102 and scan show disease is responding but when I asked about it returning he said it definitely would .. Has anyone had a remission I have stage 4 type 2c. I feel like I am living on a time bomb thanks everyone for this great site xx

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nikki9
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11 Replies
sue1212 profile image
sue1212

Hi Nikki

I feel like I am living on a time bomb as well!

I have no doubt all women with OC have the same worries about recurrence with the rates being so high for this disease.

There are many inspirational stories out there of OC survivors of 5 years and more even after a recurrence(s). The good news is that you are responding to treatment and there is always hope. There are many chemo combos out there and it's a case of finding the right one for you.

Take Care and all the best with the rest of the treatment

Sue

iamstillme profile image
iamstillme

hi , i think this is one of the difficult and hardest things about this illness as not only do we need to cope with initial diagnosis and treatment but knowing that in the future recurrences are highly likely . My surgeon said ovarian cancer is never considered to be curable . However we are all different and length of remission will depend on many things . I was only diagnosed 3 months ago and have had surgery and now on 4th chemo and responding well . I have been hearted by all on this site who continue to battle with this illness and have had many cycles of chemo. I plan to take each day as it comes and appreciate all the things i have . I have two beautiful children and intend to have as much years as possible with them . Try to stay positive and i know some days are dark and this is hard . All the best with treatment

Ally

Hi... welcome to this site. I too feel that I'm living on a time bomb. When I was first diagnosed, the only thing I could think about was the cancer. It consumed my thoughts for almost every waking moment. I was told that there is no cure for the type of disease I have. My PPC (Primary Peritoneal Cancer) is identical in cell structure to some forms of ovarian cancer and presents itself as advanced disease. I began chemo in May of 2011 and finished in September. The disease has started to grow again, but I won't be having chemo again until there's more movement. I'm at Stage 4 too. It's a very hard thing to deal with and despite a complex medical history and many operations due to other health issues, this has been my biggest life challenge so far. I agree with you totally about it being hard to live with. The uncertainty of when the treatment will be and how the disease will progress upsets and unsettles me sometimes. (Which is an understatement, I know!) As time has gone by, I have been able to think of other things too and am starting to enjoy reading again and losing myself in books. Concentration was a hard thing especially whilst I was on chemo. So things have got better emotionally. I honestly can say that I'm starting to engage with life in a much more positive way for most of the time and meeting people who are in the same boat as me has helped me so much. There is a lot more hope than I imagined when I was first diagnosed in March of last year. Really healing thoughts go your way. You're not alone.

nikki9 profile image
nikki9 in reply to

Thank you so much for your comforting words, I am really trying to be positive and not too gloomy but it is so hard, I think a lot of it is one never knows when it will appear so I find when not having treatment I am looking for symptoms. I met a lady at chemo unit who was told apricot kernels can help but you must not take them while on chemo. I don't know whether this is correct because we are all looking for a cure. Anyway healing thoughts to you as well and good health to you x

tomary profile image
tomary

My OC has been a tremendos wake up call for me.

I changed the morgage to interest only - the life insurance will take care of that when the time comes. (post office over 50s life insurance no health questions to answer WOO HOO!) and am going everywhere I ever wanted to go, skating in central park, last night of the proms, off to hot springs in Iceland next.

Life is not about weathering the storm, its learning to dance in the rain

VickyEm profile image
VickyEm in reply to tomary

What a lovely quote!

desertpirate profile image
desertpirate

Great Advice!

desertpirate profile image
desertpirate

Dear Nikki9, Mary, TinaB, Ally, Sue, M, et al,

I feel the same way, the time bomb deal. I think the best advice is about getting your head around this and living in the moment, taking things as they come. We certainly, none of us signed up to have OC, and we certainly cannot predict a recurrence. And worrying never helped or changed anything. So, hard as it is I just occupy myself with the things I enjoy. I am stage 4 OC, been through surgery and chemo and still on Avastin every three weeks (its been 14 months now). I like to line dance. I am taking a class and also teaching line dancing to patients at our Cancer Support Center. I like to shop and hike, so I do that too . . . getting my exercise. I really need to get it together and do some traveling, I am sure I'd enjoy that too. Thank you all for your posts. I am new to this community, but I can feel there is a lot of love being shared.

Desertpirate, USA

VickyEm profile image
VickyEm

Hi Nikki

So sorry that your onc giveth with one hand and taketh away with the other. Mine does this, its depressing and I really don't see what good it does. I'm already thinking I'm going to die at any minute, without them keep reminding us. My onc's favourite is to tell me that whilst I have had long remissions they will get shorter and that whilst I am not having chemo at the moment, I do realise that I will have to in the future. So, the only option I have left is to prove her wrong. Which I am succeeding in doing at present.

I finished my last chemo (3rd recurrence) in Feb 2010 and was told I would need treatment in about a year. Well ya boo sucks to her because Its July 2012, so I make that two and a half years. (I have exceeded expectations by 250%!)

I am feeling so much better since joining this site and I am now a bit cross with myself over all the time I wasted over the past 2 years - waiting to die.

I'm off to dance (and sing) in the rain.

Vx

nikki9 profile image
nikki9 in reply to VickyEm

Hi so glad you are proving your onc wrong we need all the encouragement we can get. I am really hoping for a couple of years remission as I would like to plan holidays. I was hoping to have avastin but told I couldn't have it as I was on 2nd line and it is only given for 1st line. I don't know whether this is just Essex or all counties. Anyway good luck have faith and like you I think this site is brilliant x

Pili111 profile image
Pili111

Hi this is my thirty time in 3 years. First time had hysterectomy. Then chemo. Second time debulking then chemo again. Then I got a chemo pill did not work. Now I'm in a trial. Hopefully this works. I'm in the USA

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