.......had chemo and was all clear for 7 months - then reoccurance. Am about to start gemcit/carbo. Has anyone out there got some positive news to tell me? I need a boost!!
Always looking for success stories ( having jus... - My Ovacome
Always looking for success stories ( having just been told some horrible news) are there any ladies out there who have had grade3c -
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fannyanny
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Was diagnosed June 2010, surgery July 2010, to be told nothing could be removed as the cancer had spread throughout my abdomen. 6 cycles of carboplatin followed by radical hysterectomy , removal of omentum and part of my diaphragm followed by 2 more cycles of chemo, finished first line treatment May 2011. Ca125 started going up September and by December I was back in hospital having fluid drained from my stomach. 6 more cycles of carbo/gem finished on April 27th, ca125 down to 9 from over 1000.
Have just had my first check up and ca125 down to 6, oncologist says the fact that it has gone down even further is a good sign. My life was turned upside down after diagnoses, I was living in London travelling around the world for work, had to move in with my parents and have not been back to work for over two years now.
The good news........ The cancer is no longer active YIPEE. My manager came to see me a few days ago and although I won't be going back to flying duties just yet, I am hoping to be doing ground duties over the next few months. Just wanted to share my story to let you know that there can be light at the end of what can be a very long tunnel.
Good luck with chemo, keep us all posted on how you get on.
Hugs
Shabila
have just read ur story, congratulations, hope all goes well for u... i hope i can be cancer free as well.. best wishes and good luck to all peopl who have this awful disease.
shen x
Shabila.......have just read your blog, it came up on google search when I was searching my new regime of gemCarbo and cystoplatin... My diagnosis is similar to yours but don' think OC left me the fire was just smouldering... My ca count at diagnosis was 2089 then 3 rounds - surgery - 3 rounds. Ca 125 down to 128 and remained there. June 2012
Am now on ward with partial bowel obstruction.. OC barnacles wrapped around bowel... Ca 125 now 800.....Improving and started the gemCarbo/ carboplatin yesterday....
Your blog gives me hope.. Thank you
Hi there Shabilia,
Thank you so much for that! I had a total de bulking at the end of June last year after being diagnosed with a 3c ovarian cyst on my left ovary. It was actually discovered in the April after I went to the docs feeling a little achey but no obvious symptoms! After MRI's CT's and a biopsy, it was finally decided that it was a cyst and not a fibroid from my womb. I was even told not to cancel my weeks holiday in France during May!!!
Anyway, had the op, all went well, but the surgeon said it would return ( which didn't go down to well on the 4th day after op!) Had 6 chemo - then got all clear in Dec 11 with CA125 down to 10. Had subsequent 3 monthly checks,2 in all - all ok - the latter being the ok to do the reversal of my colostomy as they had taken away part of my lower intestines in the first op. I was thinking 'At last, back to normal- almost!!'
Imagine my bitter disappointment on waking in recovery to find I still had my 'bag' and then to be told that they could not perform the Hartmans reversal as something strange had shown up on my lower intestines? They said it was small, that's why the scan had not shown it previously. A second scan showed a spread to the peritoneal and that I would have to have gem/carbo chemo. That I expected - what I didn't expect was to be told that if it didn't work, I could expect only a year to eighteen months.................my husband and I are numb. He worse than I funnily enough. This can't be as I feel well and my CA125 is still only 11?
Well, that's where we are at this moment. I am trying to think positive - I have been grouped in statistics obviously. I am going to have a second opinion at the Royal Marsden arranged by my Oncologist. Something good may come out of that. There has to be a light for me at the end of the tunnel after reading your story Shabilla. Thank you for the support. Keep in touch please and if there are any other ladies out there who have reached that LIGHT - well, let us know please!!
Hi FannyAnny,
Do you mean GRADE 3c or STAGE 3c, they are two very different things.
Staging is how far your cancer has advanced and grading is grading of the tumour itself.
A GRADE 3 tumour is a high grade aggressive thing which tends to grow fast and is more likely to spread and come back.
HOWEVER, the good news is high grade tumours do tend to respond better to chemotherapy. I had a high grade 3 tumour and it was massive but hadn`t been there long it had also started to spread but I responded very well to chemo and my prognosis is now as good as it could be.
I hope this helps this gives you that boost
Gentle hugs from Tina xx
Good of you to reply Tina,
I had a stage 3c grade 3 tumour. I get confused, sorry. Well, lets hope my second line chemo does the trick eh? Fingers crossed!
Hope all stays well foryou too.
Hugs
Which chemo did you have Tina?
Hi Fannyanny
I have good news to tell you.. I had a recurrance and was told that I had about twelve months to live...I went through palliative chemo to attempt to shrink the tumour... the oncologist insisted that it would not go away ...and little chance of remission... I am now in remission... and the tumour has gone... so never give up hope.. and expect the unexpected... my very best wishes to you.
Love x G x 
TinaWright• in reply to
Wonderful story - such uplifting news, hope the sucker stays away.
T x
• in reply toTinaWright
Hi Tina,
Thank you ...yes it is good Isn't it ? paricularly as the oncologist asked if I was expecting to see Christmas ( last Christmas) anyway I am still here although twelve months isn't up yet... but I am in remission..so I don't think it counts now...let's hope we have all got years ahead of us... Best wishes love x G x
TinaWright• in reply to
Cancer is so cruel.
Can we ever be free of the worry?
How well do you feel in yourself now?
I hope, well enough to enjoy some good times - everyone on here seems to be so positive and up beat about it - does anyone ever talk about how this really makes them feel or is that too depressing? Sometimes it can be isolating with our fears and all that, we put a brave face on to the world but how free should we be with one another.
When my mum had cancer in 1972 - 75 it wasn`t to be talked about and that was so, so hard.
There was nothing like this then or chemo come to that.
Just the diagnosis was curtains for anyone.
My little grandosn came out of school the other day so excited Jack was back at school, Jack is his 5 year old class mate, he has lukemia. Thomas said "Grandma, Jack has a wiggly line in his chest for his get better medicine", He soon added "why you crying Grandma?", I can`t always be brave I have to say - it ripped my heart in two.
Keep well - love and Hugs sent xxxxx
• in reply toTinaWright
Hi Tina
No we can't all be brave all of the time...just some of the time... and when I hear about children with cancer....It really makes me feel guilty as they are so young..... and feel I shouldn't feel sorry for myself...but we are only human after all... I don't know whether you have read my chemo poem... I think most of us on here can relate to that... and it is truly how I felt at the time (twice) but we do pick ourselves up and brush ourselves down....but I don't think cancer will ever leave our brain or thoughts do you? love and best wishes x G x
TinaWright• in reply to
Yay, children or young people just makes me feel very thankful I have had a life this far and achieved so much more than they - I have already out lived my mum by 6 years and in that time seen both daughters settled and married, been there for when they had their babies and now enjoying grandchildren at 53. More than my poor mum achieved. I only have a small imagination what it must have been like for her.
I know 53 is still very young but I still feel thankful and I wouldn`t want to get old anyway.
But cancer is something else, its been my worst enemy since I lost my mum to it when I was a teenager, I don`t think anyone ever gets over that. Its always worse for those we love when we have gone and I have have a few fears, one the unknown, 2 putting my family through that, my daughters being in danger of it and I fear for there furture and I don`t want to be cremated but not buried either just want to stay in my lovley comfy bed, LOL!.
I haven`t read your poem but I am onto it.
God Bless you from Teen xx
PS I love these delightful smily faces - how do you do that? Still can`t get my photo fathomed out either, can do it for face book but not on here for some reason.
• in reply toTinaWright
Hi Tina
I know what you mean.. I lost my dad to cancer when I was young.. .(bowel cancer) in fact all my dad's side of the family died of cancer... my mum's side all died of strokes... you can't win....I have a daughter and a granddaughter.. It is hard not to worry about them...I do have a faith though that life doesn't stop when we are gone.. but it is natural thar we don't want to leave our fammily... like you I have a lovely husband and family ( one daughter two sons and one granddaughter.. and don't we just love them sox much that it hurts ?....the smiley faces are a legacy off Lizze she taught us how to do them and that is why I do them now you press the two dots : then you press this - then this ) or this if ( if you are sad if you do them with a space they'll come out like this : - ) so it's without spaces LOL happy happy facing haha love x G x
• in reply to
I mean family oops! I had an hiccup on my finger tee ! hee ! Sox is wrong as well it is.. so... Trouble is the box as got so small that I am writing in ? ? ? hahaha
x G x
TinaWright• in reply to
don`t worry i am always making errors. Thanks for the smily face tip - eye site getting so bad I han`t even noticed some of them may have a sad face - but smiles from me today love T XXXXX
Gwyn, I knew there was a lady on here who had gone into remission after being given a very poor prognosis, but I had forgotten it was you. Please feel free to mention that story whenever possible. Its wonderful.
FannyAnny (love the name). I really feel for you, you must have been so disappointed waking up to find 'the bag' and even more so when you found out why. I was diagnosed 3c in december 1999 and have had a couple of remissions in that time, but 1st relapse back in 2005 resulted in a colostomy. I actually never asked about having a reversal, as I was too much of a chicken - did not want to go through the op again. Anyway, I'm still here, plodding along, if that is any help.
Also, I think the important thing is that you have been given a prognosis based on the possibility that the chemo DOES NOT WORK, like a worst case scenario. I am sure that there is every expectation that the chemo WILL work and that this is more likely. I was going to be put on Gem/Carbo and was told it would deffinately work to shrink my tumors. As Gwyn has proved, her chemo worked better than expected.
So, I am wishing you the very best of luck with your treatment and hoping that the chemo will kill each and every cancer cell.
Vx
hi..just read ur story, its very inspiring... i only hope. pray touch wood whatever that i can live as long as u have, i find life so stressful especcially coming upto a check up... u have given me hope ... thank u and good luck.. i hope that u continue to be cancer free
best wishes shen x
You give me hope!! You were diagnosed 1999 and we are in 2012 now that's great. I was diagnosed March 2012, stage III c. I get weekly chemo and just reached my 50% completed today. On emotionally turmoil days, I worry about reoccurance and my own longevity. I did not have colon involvement. I just has ovarian, fallopian tubes, and omentum lesions. No lymph node involvement. Thanks for your inspiration for me today. Kim
Hi Kim,
I have been in remission for one year and 2 months now but I also worry about reocurrance. I guess we wouldn`t be normal if we didn`t.
One thing my nurse said to me one day when she was taking my bloods, She said "Tina, if you sepnd all your well days worrying about the future there is little point in getting well", I thought she had a good point, it doesn`t always make it any easier though, does it?
I try so hard to turn negative into positive and I am getting good at that now but it never takes the fear of how quickly our remaining time will pass, however long. When I stop to think where the past years have gone, it makes me want to stop time in its tracks for a while so we can reflect and enjoy and take everything in. If only time could stand still for us.
For the moment I aim to make lots of memmories for my family.
And I grab as much grandchildren time as I can. I Hope to be doing lots of child minding soon when my daughter returns back to work.
Holidays and seeing the world doesn`t interest me, I have little ambition I just love my family life and my home. I have no regrets about stuff I could have done.
I have never thought WHY me, I just think WHY? WHY any of us?
But where there is life there will always be death at some point, My Mother-in-law is 86 and she is mentally going through this same fear of nearing her end.
Maybe there are more people who have our fears than we realise but no one seems to want to talk about it.
This is music to my ears - when I was hairdressing, a client of mine went through breast cancer, 1st a lump was removed, then half the breast, then the whole breast and the lymph nodes then it went into the other breast.
It was an on going thing for her - 20 years she went through surgery and treatments then about 10 years ago she got the All Clear. Who would have ever thought she`d still be around 30 years after her first diagnosis - she is my inspiration.
I`ll keep that with you and hope it keeps you strong.
Love and hugs Tina xx
Dear Tina, I lost my best friend to brain cancer when I was 30 years old and she just over 40. Our vicar always had a good way with words and said that life itself if a terminal disease but some of us are given more warning than others to prepare. I don't believe in God or an afterlife but I did find his 'take' on things very comforting. Whilst we might lose friends and loved ones their memory lives on in those they leave behind.
Those thoughts remind me how precious life is and how important it is to make the most of what we have.
I have another good news story. My sister was first diagnosed with cancer at the age of 27. She has had three separate types of cancer and each one has been the most aggressive type. Thirty-eight years later she continues to live life to the full and looks fantastic.
It's good news you've been in remission for 14 months. May that long continue! xxxx Annie
I love stories like this - but when I was going through the treatments, whay too many people told me to be positive in one breath then told me about someone else who had died from the disease. It did my head in quite frankly. Now, I am in remission no one tells me either any more.
Your story was wonderful to hear, Thank you xxxxxx
• in reply toTinaWright
I know what you mean.. we should ask the people if it's got a happy ending.. Then if they say no.. say to them don't tell me then... Haha love x G x
TinaWright• in reply to
Nice one I will put that one into practice the next time, LOL!
• in reply toVickyEm
Hi Vicky,
Yes I do try to share this as much as I can... It is a roller coaster of emotions isn't it ? Your story if I can call it that!!(life) is very encouraging too... Thank you love x G x
Hi Gwyn and VickiEm,
Thanks to you both so much for the encouraging words. We are sitting here today, not knowing what is in store but just knowing that we do not want to lose this battle. Words fail me as I am so sad for my beloved Roger and my children and family. Hoping our prayers will be answered. Did you feel this empty?
Hi again fannyanny,
I think we all need to go through that process - I know I did, I cried for my family too, it was such an awful experience to go through.
I think the not knowing is tortue - hang onto the messages and knowing miricles do happen. Just keep telling yourself that high grades usually respond better to treatment, lets pray this sucker does for you too darlings.
New treatment, new hope
Hugs from T Xxx
I was devastated when I got my 1st recurrence as I thought that it was definitely game over and that I would not recover. However, OC is now just a part of my life, as is my stoma.
However, it did take me till last year to be brave enough to wear a bikini on holiday. Yes, a bikini, with a stoma - who'd have thought it?
Vicky a bikini way to go girl ! . This just shows how much we can achieve and overcome
Love
Ally
Fantastic girl xx
• in reply toVickyEm
Vicky you have my admiration.... good on you for not letting the stoma ruin your life....best wishes love x G x
Gwyn and Vicky . Your an inspiration to us all here . When i am feeling low i look at you both and gives me courage .
Ally x
• in reply toiamstillme
Thank you Ally
But we all encourage each other on this site... as we are the only ones that really understands.. I don't know anyone now personally who has got this disease... apart from the people I meet at the hospital in passing if it wasn't for this site... I'd feel really alone.. even though my family are lovely... so thanks for your encouragement as well.. love x G x
Amazing ladies xx
Gwyn it is so good to have people going through the same thing(although we wouldnt wish it for anyone) I only know one person who has oc in my area but have never met her >Good to share xx
Love
Ally
Well, I am so happy to here all your comments girls!! My husband Roger and I both sit each day and read all your comments - it is such a help as I too feel alone as I don't know anyone either with this dreaded thing OC!! Even when I had my first chemo - it was all elderly guys with postrate and ladies with breast cancer. I especially draw hope from VickyEm as she and I sound similar in as much as we both had a 3c and stoma still in place. Wonder if I will ever get to wear a bikini again ( high waist???) Wonderful to hear from you all!!
My bikini has ruched fold over briefs. I felt the ruching hid the bag and could adjust the waist height to suit. Very similar to these (follow link).
marksandspencer.com/Marks-a...
Good old M&S!!!!
Hi fannyanny
Just incase you're not a visitor of the Ovarian Cancer National Alliance website (I know a lot of us probably are), I thought I would post you this link about success/survivor stories. (you might have to become a member to read)
inspire.com/groups/ovarian-...
Personally I enjoy reading these stories as it gives us a bit of inspiration. An American website I know and they have access to a broader range of treatments but they do have members from all over the world.
Happy reading!
Sue
Dear FannyAnny
Your post has touched many hearts. I'm so sorry you've had so much to cope with. I have the same stage, grade, etc. as you. Whilst the spread is only to the lymph nodes so far it's the most aggressive undifferentiated type of tumour. As Tina says these tumours tend to respond well to chemotherapy so why is your oncologist focussing on 'if it doesn't work'.
I managed to start off last year after my diagnosis feeling positive but every time I met my oncologist she insisted on emphasising the worst-case scenario. You seem to be going through the same experience. Always hope for the best. Keep reminding yourself you're not a statistic and nobody knows how your tumours will respond. I take the view that this is as good as it's going to get so whatever I have for the moment is there be be enjoyed to the full. Why spoil today worrying about tomorrow?
Even though we're all dealing with the bad news of having cancer I think each one of us has found things that make us realise how good life can be. Vicki's post is an inspiration and you'll find many other good news stories on this site.
I know just how you feel worrying about Roger and your children. Every now and then the brittle eggshell I've built round my emotions breaks down if I think of them. However their grief isn't yours and I think that's one place you shouldn't be going. I talked it over with my daughters and they sought help from Macmillan. It may be that your family will find comfort from various support services as you all come to terms with your having ovarian cancer.
Keep posting on this site. You are among many friends. Without our blogs our lives would be much bleaker lonelier places.
with much love xxxx Annie
Thank you Annie, you have made me feel much stronger with those wise words! I have had my daughter, hubby and 2 gorgeous grandchildren here today - it was my daughters birthday.
We have ( adults) sat around and talked at length about my situ - and I will wait for my second opinion on Thursday, and a 3rd at the Royal Marsden next week. I will not let this beat me but learn to live along with it! I have read VickyEm's comments also. Inspirational! As you say, that very brittle egg shell we protect ourselves with sometimes cracks... it's so bloody hard to take in. My oncologist, after telling me such news then says calmly, " ..but try not to think about that, just concentrate on happy times and go places etc" Oh yeah????? Does make you wonder hey? Well, this lady is not taking one persons advice. Will let you all know how I get on ok? My thanks to you Annie, and I wish you all good vibes from here on x
Yes your oncologist has the sensitivity of a brick. I guess it all depends how many questions you asked up front. I'm afraid I only wanted to take in a bit at a time so I just dealt with surgery first, then getting through the chemotherapy, then getting the post-chemo checkup. I didn't begin to think about 'what if it doesn't work' as there seemed no point in rushing ahead into worrying about something that hadn't happened.
Looking back the first few months were wierd. I was in dreadful pain before my surgery so just grateful that was sorted out straight away. My daughters were wonderful - as my super-wonderful husband. What I couldn't and can't even bear to dwell on is that my children and husband will loose lover, wife, mum. That is a hard call when you've just spent the majority of your life looking after them all. That what I meant by their grief isn't yours. I somehow came round to the conclusion that the process of my illness and demise woud have to include some sort of handing over to other people.That somehow cleared the way a bit for me.
You are already a very strong lady, determined to fight. You have a wonderful family round you and like me a lot of good fortune. I thought of getting 2nd opinions but with the benefit of hindsight a year on I would say once your local NHS has identified the problem there aren't really many choices. Surgery and chemotherapy (usually carbo-platin and taxol) is pretty standard unless you can afford to travel abroad and pay privately for alternative opinions. You could already be wondering whether your oncologist is right for you and there may be choices if your local centre is big enough. It's a little way along the line you may find 2nd opinions helpful but having said this we all have to deal with our diagnosis in our own way.
Let us know how you get on. We'll all be thinking of you and will be sharing any good ideas/advice on how to deal with the little cancer blighters.
Love Annie xxx
I have heard this before - and just thought oncologists prepare us for the worst case scenario. And they don`t always have a warm empathetic way about them when they tell us.
I wasn`t actually told I had cancer - I was asked why I thought I`d been called back so quickly and urgently? I said "I have cancer, don`t I?", then he continued to tell me how bad it was. It was almost as though it was the first step to acceptence and maybe he did this for that reason. Or maybe he`d just had a very bad day having to tell whay too many ladies they have cancer and just couldn`t bare to say it again.
Who knows, but I do know that my oncologist has been the opposite - she is always so positive - then I come on here and listen to everyone else and it makes me wonder if she is just trying to give me some time to be free of the disease while I am well and in remission.
In the beginning - every tiny detail of life and surrounding life reminded me I may not be here this time next year. Then friends started to say "every single person could think like that" and this is so, so true. Two of my closest friends lost their life to sudden brain hemorages ( sorry can`t spell), one was 46 and the other 48, this happened within only a couple of years apart. The shock everyone was left to deal with was just - no words can describe it.
I knew from that moment we must live for today, as though it is our last.
Its a good practice to do if we are able, but not always being in the right frame of mind can make this more difficult and of course if we are very unwell, its even tougher.
One thing is for sure - we are all in this together now and it is indeed wonderful to find friends with such inspirational stories.
I do believe in miricles but I am also being realistic about it too.
All we can do is prepare and focus on LOVE. I am also a spiritualist and this faith helps me suvive the thought. Continue to make happy memories and never fear that word LOVE, tell those who need to hear it, hugs are important too, hug everyone who means the world to you, tell your friends how precious they are and this is how we will be remembered.
Love to you all with a nice gentle hug from Tina xxx
Hi Tina, thanks so much for your reply. I take on board all you say... see my reply to Annie and VickyEm. A friend of mine called me this afternoon from Spain to ask how I was? On hearing, she immediately told me to get further opinions, especially from the Royal Marsden. Thank goodness for this website - I think it has saved me from going mad!! Will strive on and try to be stronger!! Once again, thankyou.
these stories have cheered me up as i am a 3c grade and this is the 3rd reoccurence in two and a half years and am presently n 3rd. line chemo.i never seem to get very long remission at all and this worries me so much my tumours over diaphram liver bowel kidney and 2 in lymph nodes and even though my tumour marker went down ti 23 within 4 mths. it shot back up agin and all tumours were back .its so distressing for all my children and hubby and i feel so guity putting them through this emotional roller coaster again and again.these stories have lifted my spirits and help me remain positive as noone knows what the future hods and cancer can turn as you have all shown godbless and thank you x una belfast.
Hi Una,
It is a bastard isn't it? I just hope in time they will start screening us ladies over a certain age!!! It could all be nipped in the bud if only GP's were more aware and don't just pass off things as irritable bowel etc!! My daughter who is 38, is now having regular checks every 6 months and says that when she reaches 50 she'll have a complete hysty even if she doesn't need one!! All because of me!! I read somewhere that a doctor in the Staes said that all women over 45 should have their ovaries removed as a precaution? Wish I had!! Keep strong - easy to say and hope your family are a strength to you also! xx
• in reply tofannyanny
Hi fannyanny,
I know this is a little late to comment... but I was just reading this...and you saying about your daughter..but did you know you can still get OC even if you have your ovaries removed?...it does cut down your chances of getting it..but OC isn't dependant on you having ovaries or not......a lot of people think that if they have had an hysterectomy they can't get OC... ....but still can..it just cuts down the chances ... . I hope you are ok as I haven't seen any comments from you for a while ...
I am thinking of you love and best wishes x G x
Hi Just to add to Gwyn on this one . Although removal of ovaries will reduce risk will not rule out completely . However what i do agree with is regular screen similar to breast cancer . Perhaps ca125/and or ultrasound after a certain age . A this means better chance of it being found early and better prognosis and B surely the cost of this outways the cost of expensive treatment
Ally x
Hi Fanny!
I was, like you, back in the cycle 9 months after the first lot of treatment finished. I became allergic to carboplatin, & cis platin did not work.
If by 'positive' news you mean 'cure' then the answer is no!
However my tumour was operable and, 9 months after the op, I feel fine and I am still clear,.
I had a colostomy but it is far less of a problem than I expected and, on Monday I am learning to irrigate which will give me control over its performance. It is a lovely day, I have been for a walk and I have just had a lovely beef salad sandwich, home made! And delicious fresh fruit salad, I am successfully getting my weight down bit by bit, I have a nice bottle of wine for tonight, several Shakespeare plays recorded for watching in bed. Life is good and each day is a gift to be enjoyed to the full.
Tomorrow a friend and I are going to try out a new Malaysian restaurant.
In other words my "positive" is every good thing that happens and being grateful I do not have Parkinsons, MS, motor neurone disease, Alzheimers or a stroke? With the cancer there are more good days than bad days at present and life is very very good!
I hope this might give you a bit of a boost! My basic message is Love Life and do not waste time on "why me?" "what if?" or "If only!" they are all unanswerable and time is too precious to waste on them!
Look up at the sky and marvel at the wonder of the clouds and the stars!
Love
Margaret! Xxxxxxxxxxxxxxx
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