Survivor of twenty years

Hi Everyone

There is very often talk on this site of how long people have survived after treatment for oc.

I have just returned from a pilgrimage to Israel and was delighted to find out that one of our group was a survivor of more than twenty years standing. She had two very large cancerous cysts that her surgical team had great trouble removing and she underwent chemo therapy afterwards but has not received any treatment since.

I know everyone is different but I was so glad to talk to her and she was quite happy for her story to go on this site.

So, never give up!!

Regards

Anne

35 Replies

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  • I hope some people find heart in this. For balance though, if you do not respond to chemo the story is very different. I am going to struggle to make it past 1 year from diagnosis. I had debaulking and 6 cycles of carbo/taxol last June. Now I can hardly walk and am vomiting 3 times a day due to the cancer in my admomen. I have not given up and am on 3rd line chemo, but hope and realism need to be balanced. We need more tailored treatments and more research. Sometimes there is no happily ever after and there really are monsters.

    Love Lizzie

    X

  • Lizzie, have been thinking about you, and wondering if you were feeling any better,but obviously not, just hoping the new treatment will give you a boost and stop that horrible sickness. My toughts are bwith you and cyber hugs again. Love Sue xx

  • Oh Lizzie!

    How awful for you! I hope that you can get the vomiting undercontrol! I am so lucky! My nausea was controlled by domperidone and metaclopramide, the steroids made me diabetic!

    I am thinking of you as I write and hoping you et some relief from the most distressing symptoms.

    Love Margaret

  • Dear Lizzie

    Sorry to hear you are feeling so awful. Hope the treatment makes things more bearable for you. Sending hugs to you.

    Love Chris xx

  • Dear lizzie,

    Sorry you are having such an awful time.I hope the new treatment works well for you.

    Juliex

  • Hi Lizzie,

    I'm sorry things are so bad, but at least you have us to talk too!

    keep your chin up and I know it's difficult, but try and stay positive. I do wish they could get your sickness under control for you. It is one problem I've not had as yet.

    Fingers crossed for you.[[[[[[[ Love n hugs ]]]]]]]]]

    Viv

  • ((Lizzie)) I've been thinking about you today

  • Hello Anne

    It is very uplifting to hear of cases like this. I hope I'll be another example as I was lucky to be treated at stage 1a. My first post-chemo review is next Tuesday.

    But Lizzie's reply is a reminder, if one were needed, of just how tough this disease is to treat successfully.

    Lizzie, your dignity is a lesson for us all and I really hope your current treatment produces some good results. You deserve it.

    Linda

  • Dear Anne

    Thanks so much for thinking of us and posting this good news story on the site. They can be very uplifting and for those of us who are lucky enough to be in some sort of remission. It's a goal to aim for.

    As Lizzie says, there has to be a balance and not everyone is going to be lucky. It does seem that luck is what we depend on and I wholeheartedly endorse Lizzie's 'take' on this that more research needs to be done and we should fight for individualised treatments. We shouldn't have to wait until a 'one size fits all' remedy is found. I wish with all my heart that something can be done to help women like Lizzie who are platinum resistant and have refractory disease.

    Lizzie, I did think of you Friday stuck in a car on the M5 in a massive traffic jam. Your hospital showed up on our sat nav and if it hadn't felt as though it would be an intrusion I would have turned the car off the motorway and popped in to help chase away the monster.

    xxx love to you all, Annie

  • Lizzie, it must be hard to read this while you are going through so much. It does all seem very random and I TOTALLY agree with you that so more research is needed. We are all thinking of you and sending vibes for that miracle.

    Well done for those of you who seem to have beaten the monster...... I always add ~ for now, anyway

    Love Wendy xx

  • Thank you all so much for your supportive posts and Annie-2 I hope I did not discourage you from your message of hope. It's just if there is anybody else out there who is in a similar position to me, it is important to represent 'the dark side' too. Hopefully, there are not too many of us, and those that I have heard of who do have issues with refractory disease seem to have lower grade cancers than mine.

    The District Nurse has just been out to put a gadget in my arm to administer steroids each day to hopefully control the vomiting etc. I was vomiting so much I was not sure I was getting any benefit from tablets. Also still orally for vomiting on cyclizine and domperidone (and docusate/senakot for laxative). Had to give Halipalidol a miss after side effects put me in A&E. I got facial twitches/spasms and my husband kept telling them, "that's not right, she's not supposed to look like that!" :-D

    Love Lizzie

    X

  • Forgot to say also drinking lots of ginger beer and finding it really settling and manna from heaven - thanks to my lovely Twin (Sara1963), Wendy and Harley who amongst others recommended it.

    Love Lizzie

    X

  • When I was very sick ginger and lemon tea was very comforting and settling alongside ginger beer!

    Margaret

  • REALLY pleased the ginger beer is a help! I am so sorry you are continuing to have such a rough time.

    I hope all goes well for you tomorrow. I will be thinking of you.

    Love Twin

  • Hi Lizzie

    Sorry you are so unwell at the moment. It was supposed to be a message of hope and encouragement: oc seems to have the most negative press but I am aware of both sides of the story.

    Thinking of you

    Love Anne

  • Thanks Anne and your original post did say you know we are all individuals. I guess I am a little raw at the moment :-o but there are many in remission who can take heart.

    Love Lizzie

    X

  • Hi Anne!

    While positive stories like this are hearterning for those of us in remission, after successful treatment, and strengthen our hope that we will be part of the lucky minority, and I am one at present, it does not help those like Lizzie who are at the other end of the treatment spectrum. I hate the references to 'battling with cancer' because it implies some failure on our part when we don't beat it. Survival rates and recurrence of this disease seem to depend on so many variables: the nature of the cancer cells; the stage of the disease at diagnosis; which other organs are involved, if any; and last, but not least, whether it has metastasised (sorry that doesn't look right). While I am happy and heartened by the luck of the long term survivors I am not holding my breath or making assumptions about myself, nor do I let anyone else. I have a terminal disease but I am determined to make the most of the rest of the journey before I reach the terminal!

    There are so many variables to this disease, it' resistance to some forms of chemo for some people and survival statistics don't help individuals. I was told, in 2010 that surgery and chemo had left me clear but, within a year I had a new tumour and had developed a severe allergic reaction to the effective chemo. I am maintaining my PMA (positive mental attitude) but I have Lizzie andthose like her in mind whenever I do anything. My next recurrence, and I know there will be one, may mean I cannot do some things any more.

    Margaret

  • Hi Anne

    Yes there is hope out there for some of us. My youngest sister and I were both diagnosed with stage 4 oc a year apart, both BRCA1. I have been in remission for 18 months now but sadly my sister did not make it so even in families this disease seems to make a balance.I try to live as best I can now which at times is not easy and recently have been struggling but I'll get back to good.

    Ann xxxxxx

  • Yes - we do need to balance the hope with the dread and although for those of us who have had good remissions it figures in our nightmares we are still only imagining what is reality for Lizzie and our hearts and our strongest positive vibes go out to you,Lizzie with hopes for a good outcome from your new treatment and admiration for your obvious courage.

    I also endorse what has been said about raising the profile of oc as has been achieved with breast cancer in terms of not only pushing for earlier diagnosis but campaigning for more research towards better treatment. I know that in some life threatening or chronic conditions the medics. and researchers havebeen willing to meet with representatives of the sufferers to achieve fuller understanding on both sides and wonder if this has ever been done in oc? It may be that there are people already toiling on this and it would be good to hear from them - perhaps I haven't searched the right website? i also wonder about NICE - does anyone know how often they review their advice and to what extent the hospitals' funding for drugs is tied to it?

    All that said I feel I should report positively as I have to another question today that the Unit I attend - the Beatson Cancer Unit in Glasgow will open in autumn 2012 an attached Translational Research Centre built with £10m raised by corporate and public subscription whose focus will be on the timely translation of research into treatments. Let's hope some of its promise will be seen in oc.

    Love and positive vibes to you all whatever aspect of this hellish disease you are coping with.

    B.

  • my name is una and i am a 3c o.c..i am starting my 3rd line chemo couse in 2 and a half years.i am getting 18 weekly coursees of taxol on its own as i am only finished full set of chemos 6months ago.i have been very down this time at the thought of going thru this all agai but i suppose i should be grateful that at least i am being offered tretment. ti keep myself focused i made a cd called angel of hope after the ovariasn cancer charity and raised21000 for the n i hospice. i live in belfast una

  • Hi Una

    I'm guite similar to you.At present I'm having my 4th round of chemo.I was diagnosed with 3c in August 2008. Had 51/2 months off since last round. Yes the thought of going through it all again is depressing but we just get on with it . I guess the alternative is a lot worse.Like you I,m very grateful for every bit of poison on offer.Finding it quite tiring this time though.

    My youngest daughter was 15 when I was diagnosed. Have now seen both daughters finish the 1st year of uni.Now I hope to see them both graduate.Not sure this is realistic , but I find it helpful, like you, to have a focus.

    When you say you made a CD, does that mean you sing?Thats an impressive sum that you raised.Have done a bit of fundraising but not on that scale.

    Keep in touch

    Hope new chemo goes well for you,

    Juliex

  • thank you so much for replying julie.its so great to talk to someone who knows were i am at.I am 58 yrs. old and have 5 children the oldest 36 and the youngest 16.He was 14 when I was diaognoses.I also have 6 grandchildrenYes I do sing.I sing at funerals and weddings and have done for 30 yrs.now so thats why I made the cd.I asked 7 local business men to donate 100pounds each to pay for the production and in return their names were printed on the cd, for advertising plus any newspaper articles or radio interviews they were mentioned.It was great as there was no outlay financially so all the money went to the hospice.We priced them at 10 pound eachand Iwent round community centres and chapels giving talks on early detection of o. c. and selling cd. after so as well as raising funds I was able o try and educate people on the facts.The first set sold raising 10 thousand but there was such a demand I had to go round 7 more sonsors for money and then sold another thousand cd. so all together the proceeds totalled 21500.People are so generous and every family has their own cancer story julie dont they.My chemo starts monday julie .^ to start with then a scan to see if its working before they will go on and heres hoping it does as my son has just started his g.c.s.e.exams and dont want him worrying.They said there is only a 20percent chance of it working this time so fingers crossed.I live in belfast so I dont know many people like me with the same disease so its comforting to speak to someone who is in the same boat thankyou and godbless

  • As far as I know I never really heard about o.c. until I got it myself.I think the profile of this decease is woeful compared to breast and cervical cancer.The mad thing is that out of the three womans cancers it is the most deadly hence the name "the silent killer" yet it is the only one of the 3 that is not funded by the goverment for screening.it seems crazy.The people i have met at cancer unit when we got talking all told me that they were either diaognosed with I.b.s.or divuticulitus and it wasnt till later when they felt no better that o.c.was discovered.Unfortunately for most cancer had already spread and just treatable.I myself was diaognoses i.b.s.Our g.ps. need to be made aware of the simularities of the both and if in doubt should be testing for both diseases as it could make all the difference getting early detection.I read an ad in the major papers last year and couldnt believe my eyes.It was appealing for donations for o.c. research and was outlining how money could be spent.It sais 25 pounds can be used to train our g.p. on spotting the signs of o.c.!Surely if they are trained practicioners they should already know the signs!If in doubt they should test patients for both i.b.s. and o.c. as that makes more sense.I personally feel that o.c. is away down the ladder compared to breast and cervical cancer media coverage.that is why I have ben going round womens centres and chapels giving talks on the early signs of o.c. to try and educate people bbecause if people are armed with the info then they can act on it if need be and it may save lives or prevent others going through what we have had to go through.Sorry for the rant but I do feel better for that! una x

  • Una, I couldn't agree more. I too had IBS, for many years, and when my symptoms became much worse my GPs just gave me a different medication to try but didn't send me for a scan or do any blood tests, and I just accepted their advice! Only when a 'signifiicant' lump could be felt did they all start to panic and I was finally diagnosed with oc. But they did then use my info as a 'study case' at my surgery and made sure all the practice GPs knew exactly what signs to look out for in future, to help prevent the same thing every happening again. That's no help to me but may prevent someone else having to go through this ordeal!

    I have just finished 2nd line chemo and been given the (almost) all clear - diagnosed 3c in Sept 2009 - so am feeling 'good' at the moment. But I am not complacent as I know it may/will return again at some point. I agree that each of our diagnoses is very individual and specific and no one treatment can 'fix all'. Yes, there are now a lot more drugs available but it always seems to be case of 'let's try this one next and see if it works, if not then we'll try the next one', rather than targeting the specific type of oc with a specific treatment. There are a lot of 'trial drugs' out there at the moment - I am on the ICON6 trial with a drug called cediranib - so there is hope that some of these drugs will prove to be of benefit! But these trials take years and we need help NOW! Well done Una for raising awareness, and money, for our cause.

    Lizzie - take good care of yourself and I really hope your treatment works, will be thinking of you so lots of love and hugs. xxxxxx Colette

  • Hi Una

    I wish your son good luck for his exams.This time last year I was having my 3rd line of chemo and my youngest was doing her A levels.What I really hate about this disease is the awful stress it exerts , not only on us but on our loved ones.I was 46 when i was diagnosed, I am now 50years old.

    Don't apologise for ranting, I identify with, and wholeheartedly agree with, every word you have written.My Gp failed me too.I went backwards and forwards for 6 months, 1st i was investigated for gallstones, and when I didn't have that he decided I had IBS.Almost 6 months was wasted. I still hate him and always will.No apology, no explanation, nothing.

    Fortunately I have an excellent Consultant who i can contact through his lovely secretary,a really good gynae oncology nurse, and also a really good macmillan nurse.I will never rely on my GP for anything.

    Diagnosing OC needs to be a basic lesson in the first year of medical school.We all pay through our taxes for Drs to be trained.Its not an optional extra.

    Like yourself I have done awareness raising locally, and a little fundraising.However I must say I feel humbled by what you have achieved in Northern Ireland.

    Una I wish you the very best for your latest treatment. Weekly Taxol is not available where I live for OC patients(but it is for breast cancer patients ,uh oh I feel another rant coming on).I live in Norfolk.My next plan is to go to London and get onto the Saproc trial, which is weekly Taxol plus a trial drug/placebo.At present I am having platinum alone 3 weekly. It worked for the 1st 2 doses ca 125 dropped by 50 and I felt better by week 3.3rd dose it crept up slightly and ? didn't feel so good week 3.Had the 4th dose last weds.Will see how I feel next week...

    Best wishes

    Juliex

  • I agree with everything everyone has said on this thread. The thing I want to know is, what is the longest time people have managed to get relief from having chemo. I am now 5 years since diagnosis,(but it still has not spread from the abdomen- I hope. Ct scan results soon) and just about to start my 6th line chemo. One year remission to start then a couple of periods of 3/4 months respite. Never had the same drug twice as I've reacted badly, (and now have neuropathy in my feet for which I take drugs to keep under control.

    Any takers?

    Love and hugs to all, and prayers for all who need them

    Viv

  • This is a very good point you raise, Viv.

    It is brilliant and fantastic for people who get a complete remission and it never comes back but that is not a realistic prospect for a lot of us. I would even consider having nice long remissions as a fortunate position to be in and would gladly do chemo once every few years if it would keep the beast at bay. However, I have wondered exactly the same as you, how long can this be maintained? I have been living with 'the beast' for 2 years 9 months.

  • Hi VickyEm

    I too would be so happy to get a nice long remission, 'the beast ' has been in my life now for almost 4 years.

    Juliex

  • Hi Viv

    In answer to your question, I had 14months off after 1st chemo , 8 months after 2nd and 51/2 months after 3rd.Like yourself, the cancer has stayed in my abdomen. Before this round I had some early bowel obstruction symptoms( constant stomach ache and pooh getting skinny). Have had platinum each time. Once with caelyx, twice with taxol, once(now) on its own.Am now allergic to platinum but this is being managed.Have only had transient neuropathy, don't have it at present.

    My time off chemo seems to be decreasing.Still hoping for the magic formula.What are you having for round 6? I am going to try and get weekly Taxol for round 5.

    Wishing you the very best.

    Juliex

  • You and I together on our 6th line in 5 years! I have repeated taxol and am about to repeat carboplatin with gemcitabine added this time. At the moment I am trying not very successfully not to wonder, I suspect until there is no response and the cancer continues. But at the moment we both are lucky to have hope.

    Love Suex

  • Hi Julie,

    I had a year after the first session and the op, carbo/taxol twice, then stopped taxol because of the neropathy in my feet, so carried on with taxol. 3 months off, then started on carbo again, but had allergic reaction, so stopped and replaced with caelyx ,then next time it was cisplatin. Last year I started with Topotecan (every day for 5 days, then 2 weeks off) after 3 sessions my CA125 started going up but the onc insisted on carrying on for the 6 treatments. He then did a combination of two drugs(?)that I took until Dec .... ca125 now 226, He is talking about Taxol or Epitotome (both oral drugs ) next.

    It all started 5 years ago this mont... first CT scan was 31st May 2007!!

    Good luck

    Viv

  • Hi Viv

    You are a year ahead of me.My scan was in July 2008 but I will celebrate my 4 year anniversary on 12th Aug( date of surgery). Chemo cocktails all around!:D. You seem to have had so many different drugs, have not heard of Epititome, but the idea of oral chemo sounds good to me.Its getting hard for them to find decent veins that still work.

    When do you start chemo?

    Best wishes

    Juliex

  • Hi! everyone.I have bad pain in my feet with the nerve end damage and am worried as from monday I start 18 weekly sessions of taxol on its own as a third line treatment.I am afraid that if my feet get any worse with taxol side effects that they may have to stop the treatment as they are bad now even before I start.I was interested in getting the drug avastin which I have read is getting good results in 3c o.cs.But when I enquired my oncoligist told me that the funding to pay for the drug hasnt been released and when it is which will be later this year it will be only offereed to 1st.line cases who are diaognosed a 3c.I think its a disgrace and should be offered to all advanced o.c. casesApparently the manufactors roche are only licsenced by goverment to give to first line 3cs.Northern Ireland is away behind the united kingdom because we have our own ruling assemble and they are so slow to get things done meanwhile people are dying waiting on these life saving drugs.When you think what politicians spend on business trips abroad first class every thing the money could be better used.una belfast p.s. thanks fitzy and julie for your replys its so good to know there are people out there who understand were I am at.

  • Hi Una

    Is your dr able to give you anything for the pain in your feet?Hopefully the weekly Taxol (which is a lower dose) will not make it worse.

    I'm not convinced that avastin is all its cracked up to be, particularly for those of us who have had lots of chemo.It can have bad side effects in some cases.I asked my oncologist about it and he said he could only get it for !st line treatment , but also he said even if he could get it for me he wouldn't want to give it to me. I could get a 2nd opinion , have done so in the past, but have decided he is right in my case. Oh by the way I forgot to tell you I'm a terrible coward!

    Take care

    Juliex

  • Hi Una,

    Make sure your onc knows about your feet. Mine said when going through the available drug options, when he knew I was on treatment for my feet, that to give me taxol might end up with me in a wheel chair.. (quality of life might be affected!!). He doesn't actually prescribe my medication for neuropathy, my GP has always said that the onc treats the cancer and she treats the side effects, so I am on gabapentin for my feet. My onc has always managed to come up with something different for me... as he says, if the remission didn't last a year the treatment didn't work, so no good giving it again, and if it had side effects that rules it out as well - hence my drug record.

    Good luck with whatever he gives you.

    Viv

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