Hi everyone long time since I have asked a question, but here goes

I have heard on sky news online that the drug avastin has been aproved does anyone know if we will be able to have this on the NHS and in any county, I live in Essex. Reading the report I was upset to see that it gives us an extra six months of life and that in the advanced stage only likely 41% are likely to make it to 5 years, I must admit this competely floored me and spent most of the evening in tears . I have stage 4 , 2c and i am in remission at moment but everyday live in fear of it returning, I know I sound like a wimp but I find this really hard to deal with when there are such brave and lovely ladies on Ovacome nikkixxx

17 Replies

oldestnewest
  • Hi Nikki

    Statistics - pah!!! Don't let it get you down. This figure would have been out of date as soon as it was published. I know that I have sometimes felt more vulnerable when I haven't been having any treatment. I would be tempted to say - don't read stuff and don't even visit this website when you are in remission. All your energy needs to be focussed on inhabiting the world of well people -which YOU are! There will be plenty of opportunity to get up to speed with new treatments etc when and IF you need to.

    I have listened to a feature on yesterday's Womans Hour on iPlayer if you are interested. It all sounds generally positive. NICE are considering approval of Avastin for OC and in the meantime applications can be made to a particular fund for treatment.

    Lots of love

    Sarah

  • I totally agree - lies, damned lies and statistics!

    We are all going to prove the stats wrong; especially you, Nikki! Don't let them undermine you.

    Isadora.

  • Hi Nikki,

    Sarah is right - these statistics are always at least 5 years out of date, my oncologist is extremelly positive I will be cured, this is what they aim for with first time cancers.

    Don`t take any notice of anyone who tells you there is no cure for OC, I know people who lived over 20 years and it still has not come back.

    41% is still almost half of those who do make it to over 5 years, pray we will be one of them.

    When ever I talk to my oncologist about the cancer coming back she tells me IF it comes back, that has to be reasurring that we may have a chance darling.

    I`m not saying I don`t worry about it, I do, its not on my mind all the time, I try to keep my mind active and whenever I have a worrying thought I hear my oncologist say` IF` and that keeps me going.

    Try to live in the here and now and enjoy this time being cancer free - a nurse told me, there is little point in us being in remission if we spend our time in worry and and a state of fear. I told her its easier said than done but I do know she is also right. I tell myself this every day and it helps me to banish the IF`s, BUT`s and MAYBE`s from my brain.

    The best person to talk to about Avastan is your oncologist, if you need to talk to someone in between those appointments then you should have an oncolgist nurse who you can phone and chat to, thats what they are there for and remember we are important enough to them to matter, they do make a difference.

    Take care of yourself luvie

    Big hugs from Tina xxx

  • Thank you so much for your comments. I wish my onc. Was like yours, mine always says when it comes back. I don't feel he is very sympathetic or supportive Anyway thank you all the lovely ladies on this site and keep your chins up hugs nikkixx

  • Nikki, I can't comment on what is happening in the UK with Avastin, I have heard it has become available but people are having difficulty getting the drug.

    I am an ex pat living in Spain and exactly 3 years ago, after many different lines of chemotherapy, my cancer was spreading (I was originally diagnosed stage 111c in Oct 2006). My Oncologist here sent me to the Royal Marsden in London for me to talk to someone in 'my mother tongue'. He also has a working relationship with Prof Kaye there. I was more or less told, go home arrange your funeral, you have months to live.

    Mt Oncologist here however thought better and immediately put me on Avastin and a daily pill Cyclophosmide. My secondary tumours in the lungs and lymph nodes were put into remission and my tumours near the liver, right kidney and abdomen have shrunk by well over 50%. Unfortunately due to a rising CA125, but still no evidence of tumour regrowth my Oncologist decided in July of last year to put me on Avastin and Carboplatin.

    Although another scan in Sept 2011 show a minute tumour shrinkage my CA 125 was going up slowly. The thoughts are that cancer cells are trying to settle in the abdomen but the chemo isn't letting them. At the end of Nov last year I was put on Cisplatin and Gemcitibane, a deadly treatment, but once my CA 125 goes down I hope to be back on my liquid gold or my Avastin as I call it.

    I do so wish I could present myself to these so called people who make these statistics as living proof the drug does work. It doesn't work for everyone, I know ladies who it didn't work for and others are not suitable candidates for the drug. For me it has been my life saver.

    I will add that I was on drug trial, but not run by the drug company but my own Oncologist with his team. He is a research Oncologist and ran the trials out of 3 centres - Malaga, Madrid and Salamanca. However I didn't quite get the monitoring you do in the UK, there was a lot of self monitoring, but this is how things go in Spain. No support, you get your drugs but for the rest of it you are one your own.

    To all you ladies out there, I wish you all the luck in the World. This to me is an amazing drug, without the horrible side effects of chemotherapy, I hope you will be able to benefit from it.

    Love Anna xx

  • One comment I forgot to mention, I have been quite plainly told my cancer is incurable, I will be on maintenance chemotherapy for the rest of my life. So I sit here and hope that more drugs like Avastin, or PARP inhibitors as they are called will soon be available to all of us.

    My motto is - whilst I have cancer, cancer does not have me.

    Love Anna xx

  • Hi Nikki,

    Compared to the ladies above I am at the beginning of my journey, but it is a very bumpy start with no remission from first line. I have no idea if I will make it 1 year or more as I have moved on straight to second line and it will be weeks before we know if it is doing anything. It is high grade cancer originally staged at 3c, but waiting for confirmation it is now in my breast and thus 4.

    However, if I could have a sniff of the remission you currently have, I would be in 7th heaven. The grass is always greener I know, but enjoy the remission and know if you responded well to first line, you are likely to respond again well. For ladies like yourself this chronic disease can be controlled for a long time.

    Love Lizzie

    X

  • Ladies, I have just listened to Radio 4 Woman's Hour yesterday afternoon the 17th on Avastin. It makes very interesting listening to and any of you out there I would be pushing and bulldozing my way to getting this drug. Do listen to the item.

    Lizzie, you are going to make one year and more. Think positive. I think 50% of the work is done by my Oncologist and the other 50% by my bloody mindedness not to give into this wretched disease. Whilst I am not saying I am always cheerful and happy, I do get 'down'; times, but I am determined I am going to keep going as long as I can.

    I never thought I would make 5 years, but I have, now my next goal is a cruise again this early summer. I will make my goals you can be sure of that. I want to see my little grand daughter start school. I desperately want to see my little lad - all 6'7" of him find himself a lovely girlfriend and get married. I have my goals and I will strive all I can to reach them. Despite the fact I feel shit some days lol

    Love Anna xx

  • Hi Anna,

    Don't get me wrong, I shall be fighting all the way. It is just hard knowing the start has been rockier than most people's as far as lack of remission. I don't say that for sympathy, but because realistically how can I compare my cases to 5 year survivors...I didn't even make 3 months off chemo - I left it with my CA125 rising? I just have to keep the faith that knowledge (from this board) and support (from those on here and around me) and sheer determination and self help will extend my life.

    Love Lizzie

    X

  • Lizzie, I also find it hard that now into my 6th year I have had very little time off chemo, but it is keeping us alive. I thought I would never make 5 years, but I did.

    It is tough, but when the going gets tough, the tough get going !!

    Love Anna xx

  • Hi girls i am very interested in the statistics posted here .Are they really a load of bull? Im afraid i have a very pessimistic onc and whrn i went to him after a total hysterectomy he said ' this is the one that will kill you' I came out heartbroken and gob smacked. It actually made me very negative and im living on the edge so to speak not sleeping and all that. Im still in treatment i must fin my list (I live in South Africa) and see if the drugs they are giving me are the same. This Avastin sounds wonderful eh? What really made me sit up was (i think it was Tinas remark that some of us last 20yrs!) Wow wouldnt that be wonderful? And another lady (From Spain i think) says her Dr says it is curable. What to believe id love to know. I love my web site and get sad when i hear of ladies who are so ill. I hope you are all ok Sending love and healing ((((((( hugs))))))) to you all Lynn XXXXXX

  • i know how you feel i wake every morning with a feeling of dread as my oncologist is very pessimistic and told me that it would come back. We need reassurance and positivity at this time, i hate seeing my onc tried to change but there wasnt anyone else. Still had my moan good luck to you all love nikkixx

  • Nikki! I used to teach stats to Geog A level students! To demonstrate their limitations I used to show that I could prove that buying a TV protected you from TB and that Bertrand Russel, using logic, could prove he was God! I then explained that all stats depend on "normal" populations. That is no predictor for individuals and no way are we "normal" ladies! We are all of us extraordinary individuals ready to fight and bolshily (is that a word? If not it should be!) refusing to go quietly. Each of us in our own way is giving this condition the finger and long may we do so!

    I was told only a minority (ie only 47%) got to 5 years. My response? That's almost half! I aim to be in the smaller half! I am 2/3 of the way there!

    Margaret

  • Well, what can I possibly add to that ladies, I don`t think for one minute any of us are being lied too and we must remember that each one of us will have a different prognosis, its like that with ALL CANCERS!!!!!!!

    However, OC has been labelled the silent killer. This is because symptoms don`t usually show up until we are already in late stages. We don`t have regular scans like mamogrmas which save lifes by detecting early breast cancer, so this is mainly why OC is a killer. A great many of us are already late stage by the time we are worrying about its symptoms - this is a fact, nothing to do with statistics.

    Obviously ALL cancers are not easily cureable unless they are found early.

    Most OC`s are in stages 3 and 4 by the time they are diagnosed.

    I was 2c, so I believe `for this reason` my oncologist is hoping for a cure!!!!!

    I try not to think about statistics too much but if my oncologist is hopeful for a cure then I have to be hopeful too.

    And yes Lynnrsa, I do know of someone who suvived 20 yrs before her OC came back.

    I must stress that this is very different for those of you already at late stage or already terminal.

    Avistan may be great at keeping us alive if we are lucky enough to be the right candidate for the drug and if it is available to us, but by the time OC has reached late stage it is no longer cureable and I believe this to be a fact, even Avistan won`t change that.

    I think this is where we have all been confussed by being told different things.

    One thing I can`t really understand is that my cancer had spread to a small part of my colon and there were cells found in the wash of my abdoman, I do wonder therefore why I was diagnosed as a 2c - I think I was borderline a 3 but the consultants are still hopefull.

    Also my oncologist team are ALL female, we don`t have any blunt male doctors who have no bedside manner. I have heard from people with other cancers how their consultants can be very blunt with no emotion at all when they give patients the devestating prognosis. Even my GP is female and she has hugged and cried with me. I guess I am really lucky to have a full female team looking after me right now.

    Yay Margaret, what is normal? We are all so different their is no normal is there hun!

    I hope that we are all learning a lot from one another - It must be extremelly hard to be told that you have no chance at suviving this.

    I also have a friend who was diagnosed with OC when she was 32 yrs old, she had no family then and therefore adopted her two boys who are now grown men.

    Judy is now 63 yrs old and still cancer free, this is the difference at being daignosed at a stage 1 to some of us at a 3 or 4.

    All we can do is pray that with ongoing scientific study`s we are closer to suviving this longer. My own mother died on her 47th birthday from OC, she had no chance at all 37 yrs ago, this was before chemotherapy, she had the full op and then nothing, no follow up appointments, nothing. When the cancer came back in her stomach, she wasn`t even told it was cancer, she was led to belive it was a ulcer. Times have changed so much and for that we have to be thankful for. Hopefully by the next generation girls will be offered a preventative drug at an early age as they are now doing for BC.

    Take care all of you and pray hard if you believe, miricales also do happen, I do believe in them too.

    Love to you all from Tina xxx

  • Hi ladies

    I read these messages everyday, but have never posted.

    I was diagnosed borderline OC in 1993, aged 25. I was treated with surgery and 6 cycles of cistplatin (boy, was that fun!) At that time in the early 90's, the 5 year survival rate was just 20%. Fast forward 18+ years and I am 43 and still fine (touch wood), with no reoccurance. I was monitored by my onc for 15 years, and now just have an annual CA125. Unfortunately also during that time, I have lost an auntie to this awful disease, and another auntie is currently having treatment. So, almost 20 years on - this disease, and the worry of a reoccurance never ever goes away. But it has made me the person I am today - and what doesn't kill you makes you stronger. In just 20 years the survival rate has more than doubled, that has got to give hope for all women that they can find a way to eradicate this FC.

    Keep fighting

    Sally x

  • Lovely to hear your story Sally - whoop! whoop you done good girl, this hasto give ladies HOPE, thank you for sharring lots of love from Tina xxxxx

  • hinikki,when i went formy mi on saturday ,i was talking to a lady who had ovarian cancer at 16 and she is now 72 ,

You may also like...